SCDC Update

Get Ready for Back to School with CHOP’s Sickle Cell School Outreach Resources 

As the 2021-2022 school year begins, it is important that students living with sickle cell disease (SCD) start the year prepared. To help, the Sickle Cell Center at Children’s Hospital of Philadelphia (CHOP) has developed a collection of comprehensive resources on SCD and how it can affect students throughout their academic career. These resources are specifically designed to help teachers, school nurses, coaches, camp counselors, and aftercare providers support their students living with SCD.    Access these SCD school resources here.

CONSA Update: “Newborn screening for sickle cell disease in Africa” Article

The Consortium of Newborn Screening in Africa (CONSA), launched in 2016 to address the global burden of SCD, shows the value of newborn screening and how it can be implemented in diverse settings throughout sub-Saharan Africa. This American Society of Hematology (ASH) supported consortium aims to introduce standard-of-care practices for screening and early-intervention therapies at participating institutions, screening 10,000 –16,000 babies per year in Kenya, Ghana, Liberia, Nigeria, Uganda, Tanzania, and Zambia and providing clinical follow-up for babies who test positive for the disease. This recent Lancet Haematology article entitled, “Newborn screening for sickle cell disease in Africa,” provides further detail on this work and current achievements.

ASH RC Sickle Cell Disease Clinical Trials Network Launches First Ten Research Sites

The ASH Research Collaborative (ASH RC) has announced the first 10 clinical research consortia to join the ASH RC Sickle Cell Disease Clinical Trials Network. The sites will be able to enroll children and adults living with SCD within their patient populations in clinical trials as part of an unprecedented national effort to streamline operations and facilitate data sharing to expedite the development of new treatments for this disease. The SCD Clinical Trials Network is poised to accelerate progress by bringing together a community of research-ready clinical sites and experienced investigators, connecting industry sponsors to sites and the community, leveraging real world data to support clinical trials through the ASH RC Data Hub, and facilitating efficient, coordinated clinical trial startup. Engagement with the community has been foundational to the development of the SCD Clinical Trials Network. To learn more, read the launch press release here.

CDC’s Sickle Cell Data Collection Program Announcements

The Sickle Cell Data Collection program determines the number of people living with SCD and monitors changes related to their health over time.

• Sickle Cell Awareness Month: CDC will be sharing resources on surveillance, real stories of people living with SCD, common complications of SCD, and more. Follow the program on Twitter at @CDC_NCBDDD to stay updated.

• Newsletter: Subscribe to The Bloodline to stay in the know about SCDC activities, data, presentations, and more. The Spring issue has been made available here.

Sick Cells and Caregiver Action Network Partnership for SCD Caregiver Resources

Sick Cells is partnering with Caregiver Action Network (CAN) to build a centralized collection of resources specifically for caregivers in the sickle cell community. These SCD-specific tools will be integrated into CAN’s Caregiver Help Desk, which offers free support services to caregivers everywhere. Access these resources here.

SCDAA Announces 2021-2023 National Teen Ambassador: Ayana Lee Johnson

Sickle Cell Disease Association of America (SCDAA) named 14-year-old Ayana Lee Johnson the 2021-2023 SCDAA National Teen Ambassador. Her reign will begin with an official coronation during SCDAA’s Annual National Convention from October 12 to 16, 2021. Learn more about Ayana here. 

FSCDR Accepting Abstract and Manuscript Submissions for Inaugural Nursing Symposium 

The Foundation for Sickle Cell Disease Research (FSCDR) is organizing their Inaugural Nursing Symposium, which is scheduled for October 2021 and Chaired by renowned SCD nursing educator, researcher, and SCDC representative for the National Black Nurses Association (NBNA): Dr. Coretta Jenerette.  FSCDR is accepting abstract and manuscript submissions for the symposium until August 20, 2021; submissions on nursing science are encouraged. Submit abstracts and manuscripts here.

IASCNAPA Scholarship Program Awardees

IASCNAPA is proud to announce the scholarship recipients of the 2021 IASCNAPA Scholarship program. Five students were selected to receive $1,500 each through the following scholarship funds: The Steven Christy Scholarship Fund, Dr. Johnson Scholarship Fund, and the newly established Donna Dixon Scholarship Fund. Please join IASCNAPA in congratulating the 2021 awardees: 

• Steven Christy Scholarship Recipient: Aderonke Adejare, Yale University​​​​​​
• Christine A. Johnson Scholarship Recipient: Andre Harris, University of Houston
• IASCNPA Scholarship Recipient: Deante Anderson, University of Texas - Arlington
• IASCNPA Scholarship Recipient: Joshua Lassey, Florida Agricultural and Mechanical University
• IASCNPA Scholarship Recipient: Kennede McLeroy-Charles, University of Arkansas for Medical Sciences

UPCOMING SCD EVENTS

Sickle Cell Community Consortium’s 8th Annual Warriors’ Convention

The Sickle Cell Community Consortium (SCCC) is hosting their 8th Annual Sickle Cell Patient & Family Educational Symposium (“The Warriors’ Convention”) virtually between August 25 to August 29, 2021. This year’s theme is “Warriors Are Resilient: We Are Stronger Together.”

Sick Cells Coverage for SCD Summit

Sick Cells is holding the 2021 Coverage for SCD Summit virtually on August 31, 2021 from 12:00pm to 4:00pm EST. This summit provides a collaborative forum to discuss the changing landscape of healthcare coverage for SCD. This meeting will convene payers, providers, pharmaceutical manufacturers, patient groups, researchers, care teams, and policymakers to discuss ways to tackle the complexities of coverage and access to SCD treatments and care. Sick Cells will share ideas on the latest strategies to measure value, improve patient outcomes, and better navigate healthcare costs. Learn more here.

Australian Sickle Cell Advocacy, inc. Inaugural Sickle Cell Conference 

The Australian Sickle Cell Advocacy, inc. is hosting its Inaugural Sickle Cell Conference, which will be held virtually via the Whova platform from September 17 to 18, 2021. This event will be the first national  conference in Australia on SCD and will center on the theme, “Breaking the Barriers: A New Horizon”. Visit the conference website to learn more.

Join STAR for 8th Annual SCD Awareness 5K Event

In honor of National Sickle Cell Awareness Month, the Sickle Cell Transplant Advocacy & Research Alliance (STAR) is holding its 8th Annual SCD Awareness 5K Event virtually from September 18 to 19, 2021. STAR is introducing a new theme to the event by encouraging different types of movement. All are welcome to participate by not only walking and running but also cycling, skating, and hiking. Funds raised through the 5K will help fund STAR’s ground breaking research in bone marrow transplant and gene therapy to cure SCD. Register for the 5K here.

SCD & COVID-19 INFORMATION AND RESOURCES

• SCDAA’s Medical and Research Advisory Committee Advisory Recommending the COVID-19 Vaccine for Individuals with SCD
• American Society of Gene and Cell Therapy’s Educational Resources on mRNA Vaccines for COVID-19
• American Society of Gene and Cell Therapy’s Educational Resources on Adenovirus-Based Vaccines for COVID-19
• SCDC’s SCD and COVID-19 Resource and Information Page