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What You Need to Know About the Coronavirus (COVID-19)

With COVID-19 on the forefront of nearly everyone’s minds, SCDAA wants to provide information from the Centers for Disease Control (CDC) to our sickle cell community. Educating yourself about the coronavirus reduces anxiety and empowers you to prevent and protect yourself – and your family – from getting sick. The potential health risk posed by COVID-19 globally is evolving constantly, so the risk assessment to our communities here in the United States may change in the upcoming weeks and months. It is therefore critical that you stay regularly informed.

Go to the CDC’s website ( for regular updates on the COVID-19. Information is updated routinely and will keep you abreast of the latest guidelines and recommendations. 

Trusted links: SCDAA. from

Here are some tips: 

  • If you feel sick, contact your medical provider immediately.
  • Avoid being close to people who are visibly sick, coughing, or sneezing. 
  • Avoid touching your eyes, nose, mouth, and face. 
  • Greet one another from a distance (limit hugs and handshakes).
  • Wash your hands with soap and water for 20 seconds (don’t stop until you finish singing the “Alphabet song”) or use hand sanitizer with at least 60% alcohol. 
  • Disinfect frequently touched objects and surfaces with Clorox or Lysol products. 
  • Cover your cough or sneeze with a tissue you can discard, then immediately wash your hands. 
  • Masks are recommended right now only if you have symptoms or if you are caring for someone with symptoms. 

Turn to the CDC’s website for the latest on all things coronavirus, such as how you can start to prepare in your homes and community. If you are planning on travelling, visit the CDC’s travel guidance to stay up to date.

Coronavirus and Sickle Cell Disease (SCD) reporting registry 

Given the interest in the emerging and evolving coronavirus (COVID-19) epidemic and the questions regarding how this will impact patients with sickle cell disease (SCD), we decided to create a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry.  We encourage SCD clinicians worldwide to report ALL cases of COVID-19 in their SCD patients, regardless of severity (including asymptomatic patients detected through public health screening).  Reporting a case to this Surveillance Epidemiology of Coronavirus) UnderResearch Exclusion (SECURE)-SCD registry should take approximately 5 minutes.  With the collaboration of our entire SCD community, we will rapidly be able to define the impact of COVID-19 on patients with sickle cell disease and understand the impact of risk factors such as genotype, prior sickle cell disease complications, or sickle cell disease related medications, on health outcomes.

Key points:

  1. This is an international effort—we are counting on robust participation and collaboration.
  2. On the project website,, we will provide regularly updated summary information about reported cases, including numbers of cases by country, number of cases by treatment, etc. so the entire SCD community has access to these data.
  3. The registry contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards.  
  4. The Medical College of Wisconsin Human Research Protection Program has determined that storage and analysis of de-identified data does not constitute human subjects research as defined under federal regulations [45 CFR 46.102] and does not require IRB approval. We hope you will actively contribute to this voluntary reporting system.  Through broadscale participation and collaboration, we will be able to answer these very pressing questions for our SCD patients and their caregivers.

To report a case of coronavirus, please visit 

If you have any questions, please reach out to

In addition to the reporting cases of COVID-19 to SECURE-SCD, we also encourage reporting to your local public health agency where applicable. 


Julie A. Panepinto, MD, MS (Pediatric Hematology, Medical College of Wisconsin)

Amanda M. Brandow, DO, MS (Pediatric Hematology, Medical College of Wisconsin)

Ashima Singh, PhD (Epidemiologist, Pediatric Hematology/Oncology/Bone Marrow Transplantation, Medical College of Wisconsin)

Shine the Light on Sickle Cell June 19, 2020 World Sickle Cell Awareness Day

 Tools & Tips for Hosting Virtual Community Gatherings

In celebration of World Sickle Cell Awareness – June 19 – people all across the nation and around the world have been planning community gatherings to Shine the Light on Sickle Cell.  

With these important events scheduled for right around the corner, you should not let COVID-19 get in the way of your effort to engage your community! Instead, you may want to consider hosting a virtual community gathering to safely …

 ·         Increase awareness

·         Build support networks

·         Raise critical resources, and 

·         Strengthen our collective resolve  

… to advocate for access to services and a find a universal cure for sickle cell disease.   

Here are some tools and tips to help you migrate from an in-person event to a virtual gathering in your community: 

First, it is important to know whoyou want to reach, the impactyou want to make and whatyou hope to accomplish. Then you can choose the best approach and platform [a few non-endorsed suggestions are listed below] for howto virtually engage your community.  


There are a number of platforms that will allow you to make virtual your awareness and advocacy gatherings, which might feature:

●       One-to-many information sessions where you have one (or a few speakers), slides or presentations to share with the wider community

●       Interactive sessions where you can screen share or do breakout rooms

●       Q&A sessions where participants sign up and can have more interaction with the speakers or presenters 

●       Community meetings of many different sizes that have multiple speakers and interaction between participants 

A few possible platforms include:

Zoom:Zoom is an increasingly popular platform because it is one of the least expensive for some of the biggest perks. There is also a free version. You can sign into the meeting via phone, web browser or download the application. It is minimally “clunky,” meaning people with a variety of broadband availabilities can sign in and generally get a clear connection. Zoom has a number of ideal features:

●       Screen share … that makes it easy to do presentations with slides

●       Breakout rooms … where you can group people randomly or assign them to rooms for smaller conversations

●       Chat and raise hand  … this feature makes it easy to interact with the presenter and other participants

Maestro Conference:For more baseline features and integrations, Maestro is a reliable platform, and it has special pricing for non-profits. Maestro also allows participants to call-in via a phone line. Maestro has more interactive tools that come as a part of the product like participant polls, Facebook and Skype integration, data capture (to keep track of who is on the call and for how long), and a staff chat. 

WebEx:WebEx has a whole line of products that are more customizable to your organization’s needs. This is useful if you have a more specific need that requires more features depending on whether you wish to engage people via meetings, training, webinars, team collaboration, or video support. 

Go-to-Meeting / Go-to-Webinar:The most economical option next to Zoom, but with fewer features (no breakout rooms in the cheapest version), it has a great baseline platform that allows up to 150 participants for first tier customers (vs 100 for Zoom). 


Public livestreamed events happen on most social media platforms now — Facebook Live, Instagram Live, Twitter Live, YouTube Live. These events usually feature one, sometimes two speakers. You can also host a type of class or activity – even a fundraiser! 

Livestream events are great for low-barrier participation as anyone can join YouTube Live, and as long as one has a Facebook, Twitter or Instagram account, they can join these as well. 

But these platforms are less helpful if the goal is to build up your audience base over the long-term because you are not able to track participants in the same way you would on conferencing platforms. Choosing which social media platform to use depends on where you have the most active following. Livestreamed videos can also be made available on the broadcast platform afterward the event.

Facebook Watch Parties: Facebook watch parties allows you to watch Facebook Live videos with a group of people in order to share in the experience of watching with others. 

There are a number of ways to structure these parties, and you can find helpful info about how to do so here

Twitter Chat: Twitter chats are live conversations about a specific topic (usually followed through a designated hashtag). It is a helpful tool to engage existing and new audiences. It usually takes place as a Q & A with a host (using a personal handle or an organization’s handle) and some designated panelists. Participants can also ask the panelists questions. It also helps attract attention to your cause in a highly interactive way. Here is a helpful guideon how to host a successful Twitter chat.


There are so many platforms to tell stories and get your stories out there to better humanize what it means to have sickle cell disease. The way you choose to tell people’s stories depends on the medium (written, video, photo). You can publish stories of survivors and family members in a more curated way or create spaces for people to tell their own stories. Some examples of successful story-telling formats are: Humans of New YorkIt Gets BetterProject, Letters from the FutureTime to Change

A few possible platforms include:

Facebook: A Facebook page or group enables people with similar interests to post their own stories, articles, opinions about a topic. A Facebook page is also a way to curate content and publish stories about people living with sickle cell. (Like Humans of New York. And a Facebook group is a good way to community with like-minded people around a specific topic of interest.

Medium: Medium is a self-publishing platform that allows people to create their own articles or blogs. Medium Collectionsalso allows editors to bring together a series of stories about a certain topic. 

Tumblr: Usually for younger audiences, Tumblr is a social media platform that is based on longer posts (than Twitter’s 240 characters) that allows users to share content and help it go viral by “reblogging” post. Consider using Tumblr if you already have a following on the platform or hope to build a consistent, interactive audience. 

Instagram: Instagram is also a wonderful platform to use photo or video to tell stories. It has a posting feature as well as an Instatories feature, where photos or videos that are posted will display for 24 hours. 

Your organization’s website or blog: You can also create a stories collection on your own website. The challenge is often driving traffic to that website and not always the easiest way to engage audiences long-term. 


The following tools are effective ways to engage and sustain highly engaged communities or teams that may support you as you organize your virtual events.

Google Groups: Google groups is an email-based forum that allows a mass group of people to communicate with one another. Anyone in the group can “post” forum topics by sending an email to the google group email address, and others in the group can respond and send information. To learn how to set up a Google Group, click here!overview

Microsoft Teams: Allows teams of any size to chat (one-off or in groups), video conference and collaborate and share Microsoft documents seamlessly. This is a good option if your team primarily uses Microsoft products. 

Slack: An increasingly popular internal messaging tool used by organizations large and small. Teams can collaborate around different topics or work streams, and it encourages openness and transparency, as members can see how conversations have evolved over time. For a helpful guide, see the Sunrise Movement’s Slack Guidelinesfor how they have built an engaged slack community of members and volunteers. 

WhatsApp: A universal messaging tool that can be on phone and desktop. WhatsApp groups allow communities to share information and media. It is especially useful for ongoing engagement after the event – a way for people to keep in touch and continue to share resources and experiences. WhatsApp has encrypted messaging, which makes it safer than many other messaging tools. It is, however, owned by Facebook which makes it less trustworthy to activists who may be in higher risk environments. 

Signal: An alternative messaging system to WhatsApp, often seen as more secure than WhatsApp. Also available on phone and desktop. 


The following are useful platforms (in addition to the tools above) to hold a training or series of trainings:

Big Marker:An all-in-one training platform that allows people to participate in live trainings. All the trainings can be recorded and put into specific files on the platform, along with handouts, worksheets and other accompanying information for the training. This is useful for one training or if you plan to host a series of trainings so all the information is in one place. 

WebinarJam:A highly rated and user-friendly platform, designed specifically for webinars with many interactive features like “pop up asks” or links you can point people to for more information. Consider this option if you are hoping to host a mass audience of 2000 or more. 

Alternative to a training platform: Use a video conferencing platform + a Google Drive folder to store files, worksheets and recordings. 


Petitions: If you have more of an advocacy strategy, launching an online petition has never been easier. Many organizations have online petitioning applications, most notably Others include: Avaazand MoveOn.

SMS: To text a number of people at once, there are a ton of tools that can be used to help your organization do more engagement in this way. SMS messaging tools are now being used as an email substitute (or enhancer) to get the word out about an event or action. Here is a trusted guideon free and cheap texting platforms for non-profits.

Google Calendar:While slightly complicated to set up, a community calendar of events can be extremely helpful for crowdsourcing the many events that will be happening in your community and for tracking others around the world!

Streaming Party, Options: Want to hold a more uplifting event that could even possibly double as a fundraiser? Stream an online party! You can do so on any of the livestream platforms, but if you want people to be able to see and interact with each other, here’s a quick guidefor how to set it up.


The technology platform you choose should depend on your organization’s or initiative’s capacity to set it up and test it [and for some, maintain it afterwards]. This will take an investment of time, energy, and resources. Your virtual event will only be as good as the preparation work you put into setting up and testing the platform before the hosted event. 


·         Helpful Tips for Hosting Online Meetings:

·         Video Conferencing: A great step by step rundown on hosting video conferences
Video Conferencing Etiquette for Everybody

·         Free Self-Paced Course: Tools and Tactics to Bump Up Your Online Organizing Game

·         The Stages Of Self Organizing: How do we build grassroots, decentralized mass movements that can quickly scale up to address immediate basic needs while fighting for long term social transformation?  Find the worksheet here

·         Decentralized Organizing: An overview: [00:45 – 1:00]

·         Digital Resources Library: Resources digital strategy and skills The Digital Plan

During this most challenging of times, we wish you and your community a safe, engaging, and enlightening community gathering to celebrate World Sickle Cell Awareness Day … on June 19 … one that Shines the Light to increase awareness of and advocacy for services and a universal cure for Sickle Cell Disease. 

Please keep us posted – via email and on Facebook — on what you are going to do on June 19 to Shine the Light on Sickle Cell Disease.



Thank you! 

 –          Shine the Light on Sickle Cell Disease Steering Committee 

  • Wash hands. 
  • Reduce physical proximity. 
  • Increase social connections.  
  • Support and strengthen the fabric of community. 

The Global Alliance of Sickle Cell Disease Organizations (GASCDO),a newly formed global alliance of sickle cell disease (SCD) organizations, is working collaboratively with other organizations to achieve its mission of inspiring hope and improving the quality of life of all people with SCD worldwide.

The GASCDO is pleased to launch a patient-centered online network {Global Sickle Cell Disease (SCD) Family Network (GSCDFN)} to connect and support the primary sickle cell disease community globally (individuals living with SCD, their families and patient organizations).
For more information and/or to join GSCDFN, go to: Connect Globally

Furthermore, GASCDO’ s membership is free and open to you, no matter where you live in the world. 
Whether you are…
– an individual living with SCD;
– a caregiver and/or family member of someone with SCD;
– a carrier of sickle cell gene;
– a patient organization serving people with SCD;
– a health care provider;
– an educator/advocate; 
– working in a sickle cell center of excellence; 
– working within research and care providers’ organizations;
– a stakeholder within the industry.
One of the benefits of membership: GASCDO connecting and showcasing your news/events to the world. To  apply for membership and be a part of the global SCD movement, go tomembership

GASCDO is here to help you,
The global sickle cell community is a priority to GASCDO. Feel free to get in touch with us at if you have any comments or questions!

 “What previously was never an adult disease, is now an adult disease,” Dr. Zukas said.

New Podcast/Videos- Sickle Cell Disease: Give Blood, Save a Life CDC is proud to announce that a new podcast, “Sickle Cell Disease: Give Blood, Save a Life,” posted in September during Sickle Cell Awareness Month. This podcast highlights the importance of blood donations from African Americans to help people with sickle cell disease who might need one or more blood transfusions.To learn more about the importance of blood donations from African Americans, as well as details about who can give blood, listen to this podcast.   To learn more about sickle cell disease, visit our sickle cell webpage. To learn more about how to donate blood, visit the American Red Cross.  To find free resources and learn more about what you can do to help people with sickle cell disease, visit the REdHHoTT web page. RedHHoTT is a project led by the Georgia Health Policy Center and funded by the Centers for Disease Control and Prevention. to shareFacebook: 1.    Georgia REdHHoTT and the @SCCConsortium are pleased to announce the five-part video series on the importance of blood transfusions for those living with sickle cell disease is now available online. Learn how to avoid transfusion-related complications.
Visit to watch. @CDC to watch. @CDC3.    Watch online the five-part video series with expert presentations to understand the importance of blood donation and transfusions for those living with sickle cell disease. Sponsored by Georgia REdHHoTT and the @SCCConsortium. Visit to watch. @CDC 4.    Visit to watch. @SCCConsortium @CDC  Twitter: 1.    Now available online — a five-part video series on how to avoid transfusion-related complications with #sicklecell. Sponsored by Georgia REdHHoTT and @SCCConsortium. Visit to watch. @CDCgov 2.    Take control of your health. Watch online this five-part series with expert presentations to understand the importance of blood donation and transfusions for those living with #sicklecell. Visit details. @CDCgov 3.    Visit to watch. @SCCConsortium @CDC  

New Hope for sickle cell patients in Nairobi Kenya  – hope sicklecell champions organization, a cbo based in Nairobi Kenya. To begin with, this organization was established by 11 members in late 2019 where after fulfilling the required procedural threshold it got registered by the government of Kenya as a CBO based on the Eastern part of the capital Nairobi Kenya. The core mandate of this CBO was to address and create awareness about sickle cell that has affected so many families especially in Nairobi. Part of the founding members were care givers, where they got extensive experience on the challenges sickle cell patients went through especially during clinic visits.  We have organized orientation workshops to educate those in contact with sickle cell patients for the first time. We are also using social media i. e Facebook page, Instagram, and Twitter to raise awareness. Contact:

Articles in the medical literature

1. Lancet Haematol. 2020 Apr;7(4):e329-e341. doi: 10.1016/S2352-3026(20)30036-3.  Paediatric to adult transition care for patients with sickle cell disease: a global perspective. Inusa BPD1Stewart CE2Mathurin-Charles S3Porter J4Hsu LL5Atoyebi W6De Montalembert M7Diaku-Akinwumi I8Akinola NO9Andemariam B10Abboud MR11Treadwell M12.AbstractSickle cell disease is a life-threatening inherited condition designated as a public health priority by WHO. Increased longevity of patients with sickle cell disease in high-income, middle-income, and low-income countries present unprecedented challenges for all settings; however, a globally standardised solution for patient transition from paediatric to adult sickle cell disease health care is unlikely to address the challenges. We established a task force of experts from a multicountry (the USA, Europe, Middle East, and Africa) consortium. We combined themes from the literature with viewpoints from members of the task force and invited experts to provide a global overview of transition care practice, highlighting barriers to effective transition care and provide baseline recommendations that can be adapted to local needs. We highlighted priorities to consider for any young person with sickle cell disease transitioning from paediatric to adult health care: skills transfer, increasing self-efficacy, coordination, knowledge transfer, linking to adult services, and evaluating readiness (the SICKLE recommendations). These recommendations aim to ensure appropriate benchmarking of transition programming, but multisite prospective studies are needed to address this growing public health need.Copyright © 2020 Elsevier Ltd. All rights reserved.
PMID: 32220342 Article link
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2. JAMA Netw Open. 2020 Mar 2;3(3):e201737. doi: 10.1001/jamanetworkopen.2020.1737.Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity.Farooq F1Mogayzel PJ2Lanzkron S3Haywood C3,4Strouse JJ5,6.AbstractImportance: Sickle cell disease (SCD) and cystic fibrosis (CF) are severe autosomal recessive disorders associated with intermittent disease exacerbations that require hospitalizations, progressive chronic organ injury, and substantial premature mortality. Research funding is a limited resource and may contribute to health care disparities, especially for rare diseases that disproportionally affect economically disadvantaged groups.Objective: To compare disease-specific funding between SCD and CF and the association between funding and research productivity.Design, Setting, and Participants: This cross-sectional study examined federal and foundation funding, publications indexed in PubMed, clinical trials registered in, and new drug approvals from January 1, 2008, to December 31, 2018, in an estimated US population of approximately 90 000 individuals with SCD and approximately 30 000 individuals with CF.Main Outcomes and Measures: Federal and foundation funding, publications indexed in PubMed, clinical trial registrations, and new drug approvals.Results: From 2008 through 2018, federal funding was greater per person with CF compared with SCD (mean [SD], $2807 [$175] vs $812 [$147]; P < .001). Foundation expenditures were greater for CF than for SCD (mean [SD], $7690 [$3974] vs $102 [$13.7]; P < .001). Significantly more research articles (mean [SD], 1594 [225] vs 926 [157]; P < .001) and US Food and Drug Administration drug approvals (4 vs 1) were found for CF compared with SCD, but the total number of clinical trials was similar (mean [SD], 27.3 [6.9] vs 23.8 [6.3]; P = .22).Conclusions and Relevance: The findings show that disparities in funding between SCD and CF may be associated with decreased research productivity and novel drug development for SCD. Increased federal and foundation funding is needed for SCD and other diseases that disproportionately affect economically disadvantaged groups to address health care disparities.Free Article 
PMID: 32219405 
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3. Blood Adv. 2020 Mar 24;4(6):1159-1165. doi: 10.1182/bloodadvances.2019001165.Phase 2 trial of montelukast for prevention of pain in sickle cell disease.Field JJ1,2Kassim A3Brandow A4Embury SH5Matsui N5Wilkerson K3Bryant V6Zhang L4Simpson P4DeBaun MR3,6.AbstractCysteinyl leukotrienes (CysLTs) are lipid mediators of inflammation. In patients with sickle cell disease (SCD), levels of CysLTs are increased compared with controls and associated with a higher rate of hospitalization for pain. We tested the hypothesis that administration of the CysLT receptor antagonist montelukast would improve SCD-related comorbidities, including pain, in adolescents and adults with SCD. In a phase 2 randomized trial, we administered montelukast or placebo for 8 weeks. The primary outcome measure was a >30% reduction in soluble vascular cell adhesion molecule 1 (sVCAM), a marker of vascular injury. Secondary outcome measures were reduction in daily pain, improvement in pulmonary function, and improvement in microvascular blood flow, as measured by laser Doppler velocimetry. Forty-two participants with SCD were randomized to receive montelukast or placebo for 8 weeks. We found no difference between the montelukast and placebo groups with regard to the levels of sVCAM, reported pain, pulmonary function, or microvascular blood flow. Although montelukast is an effective treatment for asthma, we did not find benefit for SCD-related outcomes. This clinical trial was registered at as #NCT01960413.© 2020 by The American Society of Hematology.PMCID: PMC7094028 Free PMC Article 
PMID: 32208487 
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4. Blood Cells Mol Dis. 2020 Mar 10;83:102424. doi: 10.1016/j.bcmd.2020.102424. [Epub ahead of print]Leukocyte adhesion to P-selectin and the inhibitory role of Crizanlizumab in sickle cell disease: A standardized microfluidic assessment.Man Y1Goreke U1Kucukal E1Hill A2An R1Liu S1Bode A2Solis-Fuentes A2Nayak LV2Little JA3Gurkan UA4.AbstractUpregulated expression of P-selectin on activated endothelium and platelets significantly contributes to the initiation and progression of vaso-occlusive crises (VOC), a major cause of morbidity in sickle cell disease (SCD). Crizanlizumab (ADAKVEO®), a humanized monoclonal antibody against P-selectin, primarily inhibits the interaction between leukocytes and P-selectin, and has been shown to decrease the frequency of VOCs in clinical trials. However, the lack of reliable in vitro assays that objectively measure leukocyte adhesion to P-selectin remains a critical barrier to evaluating and improving the therapeutic treatment in SCD. Here, we present a standardized microfluidic BioChip whole blood adhesion assay to assess leukocyte adhesion to P-selectin under physiologic flow conditions. Our results demonstrated heterogeneous adhesion by leukocytes to immobilized P-selectin, and dose-dependent inhibition of this adhesion following pre-exposure to Crizanlizumab. Importantly, treatment with Crizanlizumab following adhesion to P-selectin promoted detachment of rolling, but not of firmly adherent leukocytes. Taken together, our results suggest that the microfluidic BioChip system is a promising in vitro assay with which to screen patients, monitor treatment response, and guide current and emerging anti-adhesive therapies in SCD.Copyright © 2020 Elsevier Inc. All rights reserved.
PMID: 32208292 
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5. JMIR Hum Factors. 2020 Mar 24;7(1):e14599. doi: 10.2196/14599.Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements.Issom DZ1,2Henriksen A3Woldaregay AZ4Rochat J1,2Lovis C1,2Hartvigsen G4.AbstractBACKGROUND: Sickle cell disease (SCD) is a hematological genetic disease affecting over 25 million people worldwide. The main clinical manifestations of SCD, hemolytic anemia and vaso-occlusion, lead to chronic pain and organ damages. With recent advances in childhood care, high-income countries have seen SCD drift from a disease of early childhood mortality to a neglected chronic disease of adulthood. In particular, coordinated, preventive, and comprehensive care for adults with SCD is largely underresourced. Consequently, patients are left to self-manage. Mobile health (mHealth) apps for chronic disease self-management are now flooding app stores. However, evidence remains unclear about their effectiveness, and the literature indicates low user engagement and poor adoption rates. Finally, few apps have been developed for people with SCD and none encompasses their numerous and complex self-care management needs.OBJECTIVE: This study aimed to identify factors that may influence the long-term engagement and user adoption of mHealth among the particularly isolated community of adult patients with SCD living in low-prevalence, high-income countries.METHODS: Semistructured interviews were conducted. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic analysis. Analysis was informed by the Braun and Clarke framework and mapped to the COM-B model (capability, opportunity, motivation, and behavior). Results were classified into high-level functional requirements (FRs) and nonfunctional requirements (NFRs) to guide the development of future mHealth interventions.RESULTS: Overall, 6 males and 4 females were interviewed (aged between 21 and 55 years). Thirty FRs and 31 NFRs were extracted from the analysis. Most participants (8/10) were concerned about increasing their physical capabilities being able to stop pain symptoms quickly. Regarding the psychological capability aspects, all interviewees desired to receive trustworthy feedback on their self-care management practices. About their physical opportunities, most (7/10) expressed a strong desire to receive alerts when they would reach their own physiological limitations (ie, during physical activity). Concerning social opportunity, most (9/10) reported wanting to learn about the self-care practices of other patients. Relating to motivational aspects, many interviewees (6/10) stressed their need to learn how to avoid the symptoms and live as normal a life as possible. Finally, NFRs included inconspicuousness and customizability of user experience, automatic data collection, data shareability, and data privacy.CONCLUSIONS: Our findings suggest that motivation and engagement with mHealth technologies among the studied population could be increased by providing features that clearly benefit them. Self-management support and self-care decision aid are patients’ major demands. As the complexity of SCD self-management requires a high cognitive load, pervasive health technologies such as wearable sensors, implantable devices, or inconspicuous conversational user interfaces should be explored to ease it. Some of the required technologies already exist but must be integrated, bundled, adapted, or improved to meet the specific needs of people with SCD.Free Article 
PMID: 32207692 
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6. Curr Opin Hematol. 2020 Mar 13. doi: 10.1097/MOH.0000000000000582. [Epub ahead of print]Effective use of hydroxyurea for sickle cell anemia in low-resource countries.Power-Hays A1Ware RE2,3,4.AbstractPURPOSE OF REVIEW: Over the past several decades, hydroxyurea has emerged as a well tolerated and potent disease-modifying therapy for children and adults with sickle cell anemia (SCA). Strong, evidence-based recommendations from the National Institutes of Health, American Society of Hematology, and British Society of Haematology document that hydroxyurea is now standard of care treatment for SCA. In low-resource settings, however, hydroxyurea is rarely utilized due to lack of availability, inadequate treatment guidance, and excessive costs.RECENT FINDINGS: Research trials conducted within the Caribbean and sub-Saharan Africa confirm the efficacy of hydroxyurea as a well tolerated, feasible, and beneficial treatment in low-resource countries. Hydroxyurea is therefore vital to reaching the targets for control of SCA outlined by the WHO. To maximize its utilization toward real-world effectiveness, specific attention must be given to healthcare provider education and training, public and institutional awareness, and medication access and affordability.SUMMARY: Efforts to introduce hydroxyurea effectively into low-resource countries should urgently address the lack of treatment guidelines, gaps in knowledge and clinical infrastructure, and medication inaccessibility. Partnerships among governmental, academic, pharmaceutical, and charitable organizations must tackle these barriers so that all individuals living with SCA worldwide can benefit from hydroxyurea.
PMID: 32205588 
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7. Curr Opin Hematol. 2020 Mar 19. doi: 10.1097/MOH.0000000000000581. [Epub ahead of print]Current and future gene therapies for hemoglobinopathies. Brendel C1,2,3Williams DA1,2,3. AbstractPURPOSE OF REVIEW: In this work we briefly summarize the key features and currently available conventional therapies for the two main β-hemoglobinopathies, sickle cell disease (SCD) and β-thalassemia, and review the rapidly evolving field of novel and emerging genetic therapies to cure the disease.RECENT FINDINGS: Gene therapy using viral vectors or designer nuclease-based gene editing is a relatively new field of medicine that uses the patient’s own genetically modified cells to treat his or her own disease. Multiple different approaches are currently in development, and some have entered phase I clinical studies, including innovative therapies aiming at induction of fetal hemoglobin.SUMMARY: Early short-term therapeutic benefit has been reported for some of the ongoing clinical trials, but confirmation of long-term safety and efficacy remains to be shown. Future therapies aiming at the targeted correction of specific disease-causing DNA mutations are emerging and will likely enter clinical testing in the near future.
PMID: 32205585 
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8. Hematol Oncol Stem Cell Ther. 2020 Mar 12. pii: S1658-3876(20)30016-9. doi: 10.1016/j.hemonc.2019.12.001. [Epub ahead of print]Proceedings of the meeting of the Pediatric Disease Working Party (PDWP) of the European group for Blood and Marrow Transplantation (EBMT) on sickle cell disease 16-17 May 2019, Regensburg, Germany.Corbacioglu S1Gluckman E2Alahmari A3Kassim A4de la Fuente J5.Free Article 
9. Hematol Oncol Stem Cell Ther. 2020 Mar 12. pii: S1658-3876(20)30027-3. doi: 10.1016/j.hemonc.2019.12.008. [Epub ahead of print] Should young children with human leukocyte antigen identical sibling donor be offered hematopoietic cell transplantation? Krishnamurti L1.AbstractAvailability of an HLA-identical sibling donor raises the question “should young children with an HLA identical sibling donor be considered for hematopoietic cell transplantation (HCT) even before they manifest severe clinical presentations of sickle cell disease (SCD)?” The overall survival (OS) and event free survival (EFS) following HCT from an HLA identical sibling is excellent in young children and become worse with increasing age. SCD related complications, organ dysfunction, quality of life, and risk for premature mortality all worsen with age. The ethical principles of non-maleficence, beneficence, autonomy and justice all support the consideration of this life, quality of life and organ saving therapy at a young age.Copyright © 2020. Published by Elsevier Ltd.Free Article 
PMID: 32202246 
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10. Hematol Oncol Stem Cell Ther. 2020 Mar 12. pii: S1658-3876(20)30026-1. doi: 10.1016/j.hemonc.2019.12.007. [Epub ahead of print] Standard management of sickle cell disease complications. Abboud MR1..AbstractSickle cell disease remains a major public health concern in sub-Saharan Africa, Europe, and the United States. The survival rate of children and adolescents has increased immensely in developed countries, whereas the survival rate for adults lagged behind. The increase in the pediatric survival rate is attributable to the institution of hydroxyurea treatment as well as stroke prevention strategies. In this review, we discuss the management of the sickle disease major complications such as pain, stroke, and acute chest syndrome with the most current hydroxyurea use and transfusion therapy.Copyright © 2020. Published by Elsevier Ltd.Free Article 
11. Hematol Oncol Stem Cell Ther. 2020 Mar 12. pii: S1658-3876(20)30019-4. doi: 10.1016/j.hemonc.2019.12.004. [Epub ahead of print] Status quo of allogeneic stem cell transplantation for patients with sickle cell disease using matched unrelated donors.Oevermann L1Sodani P2.AbstractThis mini review is based on an oral presentation reflecting the current status quo of allogeneic hematopoietic stem cell transplantation (HSCT) for patients with sickle cell disease (SCD) using matched unrelated donors (MUDs) presented at the EBMT Sickle Disease Meeting held in Regensburg, Germany, in May 2019. Although the clinical trial landscape for MUD HSCT in patients with SCD is limited to date, some attempts to improve patient outcome in terms of overall survival and event-free survival have been made recently, including optimization of conditioning regimens and prevention of engraftment failure as well as graft-versus-host disease. The results achieved by these approaches are summarized in this review and are still unsatisfactory. Whether new haploidentical transplantation protocols will achieve superior results and are able to replace MUD HSCT for patients with SCD remains to be elucidated.Copyright © 2020. Published by Elsevier Ltd.Free Article   
12. Hematol Oncol Stem Cell Ther. 2020 Mar 12. pii: S1658-3876(20)30017-0. doi: 10.1016/j.hemonc.2019.12.002. [Epub ahead of print]What is the place of hematopoietic stem cell transplantation in the management of cerebral vasculopathy in children with sickle cell anemia? Bernaudin F1.AbstractCerebral vasculopathy is the most severe complication affecting children with sickle cell anemia. Significant progress has been made in the management of sickle cell anemia cerebral vasculopathy, including early transcranial Doppler screening, chronic transfusion, andhydroxyurea. Nevertheless, for patients with a potential matched-sibling donor (MSD), stem cell transplantation (SCT) is now the treatment offering the best cerebral vasculopathy outcome. In the absence of MSD,alternative SCT should be recommended only in those with worsening cerebral vasculopathy despite standard treatments, and should be limited to related haplo-identical SCT undertaken in controlled studies.Copyright © 2020. Published by Elsevier Ltd.Free Article 
PMID: 32202243 
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13. Hematol Oncol Stem Cell Ther. 2020 Mar 16. pii: S1658-3876(20)30034-0. doi: 10.1016/j.hemonc.2019.12.011. [Epub ahead of print] Alternative donor hematopoietic stem cell transplantation for sickle cell disease in Europe. Gluckman E1Cappelli B2Scigliuolo GM2De la Fuente J3Corbacioglu S4.AbstractAllogeneic hematopoietic stem cell transplantation (HSCT) is, to date, the only curative treatment for sickle cell disease (SCD). Because an human leukocyte antigen (HLA)-matched sibling donor is not always available, alternative stem cell sources such as unrelated or haploidentical related donors have been explored. To date, few series of SCD patients transplanted with an unrelated donor, cord blood, and haploidentical related donor have been reported, but the high rates of rejection and chronic graft versus host disease have limited their widespread application. We describe the outcomes of a retrospective, registry-based, survey on 144 alternative donor HSCT performed for SCD in 30 European Society for Blood and Marrow Transplantation centers between 1999 and 2017. Data on 70 unrelated adult donors (49%), six cord blood (4%), and 68 haploidentical donors (47%; including post-HSCT Cy, ex vivo T-cell depleted, and other haplo-HSCTs) were reported and missing information was updated by the centers. Overall, 16% patients experienced graft failure, Grade II-IV acute GVHD at 100 days was 24%, whereas Grade III-IV was 10%. Chronic GVHD was observed in 24% (limited for 13 patients and extensive for 18 patients). Overall, the 3-year overall survival (OS) was 86% ± 3% and 3-year event-free survival (EFS; considering death and graft failure as events) was 72% ± 4%. We therefore conclude that alternative donor HSCT for SCD can be feasible but efforts in decreasing relapse and GVHD should be promoted to increase its safe and successful utilization. Moreover, a better knowledge of HLA matching and the tailoring of conditioning could help improve EFS and OS.Copyright © 2020. Published by Elsevier Ltd.Free Article 
PMID: 32201153 
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14. Hematol Oncol Stem Cell Ther. 2020 Mar 16. pii: S1658-3876(20)30033-9. doi: 10.1016/j.hemonc.2019.12.010. [Epub ahead of print] How to setup a successful transplant program for hemoglobinopathies in developing countries: The Cure2Children approach.Faulkner L1.AbstractHematopoietic stem cell transplantation (HSCT) remains the only established definitive cure for severe hemoglobinopathies, such as sickle cell disease (SCD) and thalassemia-the most prevalent life-threatening non-communicable disease of childhood globally. HSCT can not only cure over 85% of children with a compatible sibling but also restore normal health-related quality of life in most cases who do not have major irreversible organ damage at transplant. In low- and middle-income countries (LMICs), particularly in sub-Saharan Africa, SCD carrier rate can be up to 30% and 1% of live births have SCD. Relatively simple and inexpensive measures such as newborn screening, early diagnosis, caregiver education, and timely institution of anti-pneumococcal prophylaxis and hydroxyurea therapy can substantially reduce SCD-related mortality and morbidity. Improved prevention and early care should proceed in parallel with the development of transplant services and hope for cure. Cure2Children, an Italian NGO, has supported the startup of several bone marrow transplantation programs in LMICs where over 500 transplants have been performed over the last 10 years, with outcomes not substantially different from high-income countries but at a fraction of the cost. This report summarizes this experience and suggests some strategies to set up new HSCT units.Copyright © 2020. Published by Elsevier Ltd.Free Article 
PMID: 32201151 
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15. Hematol Oncol Stem Cell Ther. 2020 Mar 16. pii: S1658-3876(20)30038-8. doi: 10.1016/j.hemonc.2019.12.012. [Epub ahead of print] Curative options for sickle cell disease in Africa: Approach in Tanzania.Makani J1Sickle Cell Programme, Muhimbili University of Health and Allied Sciences2.Free Article 
PMID: 32201150 
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16.  Curr Pain Headache Rep. 2020 Mar 21;24(5):17. doi: 10.1007/s11916-020-00854-y.A Comprehensive Review of the Treatment and Management of Pain in Sickle  Cell Disease.Fiocchi J1Urits I2Orhurhu V3Orhurhu MS4Giacomazzi S1Hoyt B1Kaye AD5Kaye RJ5Viswanath O6,7,8.AbstractPURPOSE OF REVIEW: Sickle cell disease (SCD) is a hematological disorder which leads to serious complications in multiple organ systems. While significant research has addressed many of the effects of acute pain episodes and end-organ damage connected to this disease, little has approached the chronic pain state associated with this condition.RECENT FINDINGS: Associated chronic pain represents a significant detractor from the quality of life experienced by these patients, affecting over half of those with SCD on more days than not. Current treatment typically is centered upon preventing and responding to acute vasoocclusive crises, presumably because this is the most common reason for hospitalization in these patients. The lack of management of chronic pain symptoms leaves many with SCD in a state of suffering. In this review, the treatment methodologies of SCD patients are examined including alternative treatments, both pharmaceutical and non-pharmaceutical, as well as procedural approaches specifically aimed at reducing chronic pain in these patients.
PMID: 32200490 
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17. Biol Blood Marrow Transplant. 2020 Mar 18. pii: S1083-8791(20)30151-8. doi: 10.1016/j.bbmt.2020.03.014. [Epub ahead of print] Motivations and decision-making of adult sickle cell patients in high-risk clinical research. Cho HL1Kim SY1Fitzhugh C2Hsieh M3Tisdale J3Grady C4.AbstractBACKGROUND: Potentially curative but high-risk trials of gene therapy or stem cell transplantation (PBSCT) for Sickle Cell Disease (SCD) pose new opportunities for adults with SCD, many of whom experience significant disease burden and complications with few treatment options, as well as stigma and disparities in care. We explored motivations and decision-making processes of enrollees and decliners of such trials.METHODS: Semi-structured interviews with a purposive sample of 20 enrollees and 6 decliners. Interviews explored participants’ SCD experiences, motivations and decision-making about trial participation, understanding of research-related information, and retrospective reflections. Interviews were analyzed with content analysis.RESULTS: Most identified the purpose of research, risks, and uncertainties of participation. Both enrollees and decliners described deliberative weighing of study risks and potential benefits (especially the prospect of a cure), with heavy factoring of their SCD status, experiences, and desire for a better life. Despite the influence of spirituality/religion and support of family and friends, all described the decision about participation as their own. In some patients, the primary outcome status defined by the trial did not match the patients’ perceived outcomes. Patients with negative experiences expressed a desire for greater emphasis on risks and possible outcomes during informed consent.CONCLUSIONS: This cohort of adults with SCD were thoughtfully deliberative in their decisions about gene therapy or PBSCT trials. Future participants’ decision-making may be enhanced by emphasizing that ‘successful’ scientific outcomes can still involve complications or symptoms and be facilitated by referrals to former research participants and anticipatory discussions.Copyright © 2020. Published by Elsevier Inc.
PMID: 32200120 
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18. Am J Med. 2020 Mar 18. pii: S0002-9343(20)30200-X. doi: 10.1016/j.amjmed.2020.02.017. [Epub ahead of print] Prognostic value of hyponatremia during ACUTE PAINFUL EPISODES in sickle cell disease. Rech JS1Yao K2Bachmeyer C3Bailleul S4Javier O5Grateau G6Lionnet F1Steichen O7.AbstractBACKGROUND: Low plasma sodium concentration has been recognized as a prognostic factor in several disorders but never evaluated in sickle cell disease. The present study evaluates its value at admission to predict a complication in adult sickle cell disease patients hospitalized for an initially uncomplicated acute painful episode.METHODS: The primary endpoint of this retrospective study, performed between 2010 and 2015 in a French referral center for sickle cell disease, was a composite criterion including acute chest syndrome, intensive care unit transfer, red blood cell transfusion or inpatient death. Analyses were adjusted for age, sex, hemoglobin genotype and concentration, LDH concentration, and white blood cell count.RESULTS: We included 1218 stays (406 patients). No inpatient death occurred during the study period. Hyponatremia (plasma sodium ≤ 135 mmol/L) at admission in the center was associated with the primary endpoint (adjusted odds ratio (OR) 1.95 [95% confidence interval (CI) 1.3-2.91, p=0,001]), and with acute chest syndrome (OR 1.95 [95% CI 1.2-3.17, p=0.008]) and red blood cell transfusion (OR 2.71 [95% CI 1.58-4.65, p<0.001]), but not significantly with intensive care unit transfer (OR 1.83 [95% CI 0.94-3.79, p=0.074]). Adjusted mean length of stay was longer by 1.1 days (95% CI 0.5-1.6, p<0.001) in patients with hyponatremia at admission.CONCLUSIONS: Hyponatremia at admission in the medical department for an acute painful episode is a strong and independent prognostic factor of unfavorable outcome, and notably acute chest syndrome. It could help targeting patients who may benefit from closer monitoring.Copyright © 2020 Elsevier Inc. All rights reserved.
PMID: 32199810 
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20. Hematol Oncol Stem Cell Ther. 2020 Mar 12. pii: S1658-3876(20)30028-5. doi: 10.1016/j.hemonc.2019.12.009. [Epub ahead of print] Using novel magnetic resonance imaging methods to predict stroke risk in individuals with sickle cell anemia. Jordan LC1Kassim AA2Wilkerson KL2Lee CA3Waddle SL4Donahue MJ5.AbstractSickle cell anemia (SCA) is a well-characterized monogenetic disorder with a high prevalence of cerebral vasculopathy, silent cerebral infarcts, and strokes. A significant mechanism for cerebral infarction in SCA is hemodynamic imbalance. To compensate for reduced oxygen-carrying capacity due to anemia, individuals with SCA have chronically elevated cerebral blood flow to maintain viable oxygen delivery to the brain tissue. Often the oxygen extraction fraction (ratio of oxygen consumed to oxygen delivered) is increased in more severely affected individuals. Subsequently, cerebrovascular reserve capacity, the ability of arterioles to dilate and further increase the cerebral blood volume and flow, will be reduced. These hemodynamic profiles have been associated with prior cerebral infarcts and increased evidence of disease severity. These cerebral hemodynamic parameters can be assessed noninvasively with noncontrast magnetic resonance imaging (MRI) of the brain utilizing specific MRI methods. This review focuses on using advanced neuroimaging methods to assess stroke risk in individuals with SCA, and such methods may be utilized before and after bone marrow or hematopoietic stem cell transplant to assess cerebral hemodynamic response. This manuscript is part of the Proceeding of The European Group for Blood and Marrow Transplantation (EBMT) Congress on Sickle Cell Disease, 16th-17 May 2019, Regensburg, Germany.Copyright © 2020. Published by Elsevier Ltd.Free Article 
PMID: 32192979 
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21. Environ Res. 2020 May;184:109292. doi: 10.1016/j.envres.2020.109292. Epub 2020 Feb 27. Ambient air pollution and sickle cell disease-related emergency department visits in Atlanta, GA. Blumberg AHEbelt STLiang DMorris CRSarnat JA.AbstractBACKGROUND: Sickle cell disease (SCD) is an inherited, autosomal recessive blood disorder, among the most prevalent genetic diseases, globally. While the genetic and hemolytic dynamics of SCD have been well-characterized, the etiology of SCD-related pathophysiological processes is unclear. Although limited, observational evidence suggests that environmental factors, including urban air pollution, may play a role.OBJECTIVES: We assessed whether daily ambient air pollution concentrations are associated with corresponding emergency department (ED) visit counts for acute SCD exacerbations in Atlanta, Georgia, during a 9-year (2005-2013) period. We also examined heterogeneity in response by age and sex.METHODS: ED visit data were from 41 hospitals in the 20-county Atlanta, GA area. Associations between daily air pollution levels for 8 urban air pollutants and counts of SCD related ED visits were estimated using Poisson generalized linear models.RESULTS: We observed positive associations between pollutants generally indicative of traffic emissions and corresponding SCD ED visits [e.g., rate ratio of 1.022 (95% CI: 1.002, 1.043) per interquartile range increase in carbon monoxide]. Age stratified analyses indicated stronger associations with traffic pollutants among children (0-18 years), as compared to older age strata. Associations involving other pollutants, including ozone and particulate matter and for models of individuals >18 years old, were consistent a null hypothesis of no association.DISCUSSION: This analysis represents the first North American study to examine acute risk among individuals with SCD to urban air pollution and provide evidence of urban air pollution, especially from traffic sources, as a trigger for acute exacerbations. These findings are consistent with a hypothesis that biological pathways, including several centrally associated with oxidative stress, may contribute towards enhanced susceptibility in individuals with SCD.Copyright © 2020 Elsevier Inc. All rights reserved.
PMID: 32179263 
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Sickle Cell Conferences and Events

UPDATE! 2020 Hemoglobinopathy Counselor Training Course now VIRTUAL

Due to the COVID-19 outbreak the decision was made to transition the 2020 Hemoglobinopathy Counselor Training Course to a VIRTUAL event.  The two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, will still take place on April 15thand 16th, but we will be using Zoom web conferencing to host virtual sessions.  The course registration fee is $250.  The deadline to register has been extended to April 13th, 2020. Nursing and social work continuing education credits are available.  For more information, please email:  Registration is available online at

The Hemoglobinopathy Counselor Training Course will be held in Cincinnati on April 15-16, 2020. UPDATE! 2020 Hemoglobinopathy Counselor Training Course now VIRTUAL

Due to the COVID-19 outbreak the decision was made to transition the 2020 Hemoglobinopathy Counselor Training Course to a VIRTUAL event. The two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, will still take place on April 15th and 16th, but we will be using Zoom web conferencing to host virtual sessions. The course registration fee is $250. The deadline to register has been extended to April 13th, 2020. Nursing and social work continuing education credits are available. For more information, please email:

Webinar Training On March 23, from 3-4 p.m. ET, NICHQ is hosting Increasing Appointment Attendance: A Vital Opportunity to Improve Health Outcomes for Those Living with Sickle Cell Disease. This webinar responds to the urgent need to find opportunities to help more patients with sickle cell disease (SCD) attend recommended follow-up appointments, which have the potential to improve their health and quality of life. Specifically, the webinar will: Share key takeaways from a national study on appointment attendance among patients with SCDShare findings from a series of stakeholder interviews, including common reasons behind missed appointments and suggestions for increasing appointment attendanceFacilitate an interactive discussion on systems-, hospital- and individual-level opportunities to increase appointment attendance.

2020 Indiana Sickle Cell Conference “Sickle Cell Trait: Taking a Closer Look” The new date September 25th. This one-day Sickle Cell Disease conference will feature educational sessions for healthcare providers, patients/families, and social services providers. The morning sessions will be devoted to healthcare providers and the afternoon sessions will be tailored for patients, family members and social workers.  Medically oriented topics will include improving awareness about Sickle Cell Trait and some of the health complications that research indicates can be associated with it.  Health care providers and others will be presented with information that will broaden current thinking about the prevalence of trait and its impacts on the human body.  Patient oriented topics will include sessions on trait education, including the variant Sickle Cell genotypes and inheritance patterns.  Both sessions are open to the public. All attendees will be provided with information about available resources and current trends in the field.

registration link…

First IASCNAPA Conference 
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) Sickle Cell Conference: Treating the Whole Person scheduled for 4/17/2020 in Memphis is cancelled due to COVID-19 concerns.  The decision to cancel the conference took into account many important factors, including the risk of unnecessary exposure to our patient population. 

The event is rescheduled for April 9, 2021 at the Memphis Hilton.  

Your understanding and support are greatly appreciated! For information go to

Symposium on heart complications in SCD on May 22ndat St. Jude in Memphis TN. Registration is free. For information:

Foundation for Sickle Cell Disease Research Symposium 
The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The Symposium focuses on interactive education, sharing of best practices, and exploring novel approaches to dealing with SCD that goes beyond theory to develop practical, real-life solutions. The next annual FSCDR symposium will take place June 12-14, 2020, in Fort Lauderdale, FLLearn more and register today