United to Conquer Sickle Cell Disease

SCDC Update, August 2018


Patients & Caregivers Hold Successful Patient Conference   

Congratulations to the Sickle Cell Community Consortium (SCCC), the Sickle Cell Foundation of Tennessee, the Sickle Cell Champions Association, Hope for SCD, and the International Association of Sickle Cell Nurses and Professional Associates for hosting the 5th Annual Sickle Cell Patient and Family Educational Symposium earlier this month in Memphis, TN. The meeting focused on mental health, with panel discussions that touched upon coping mechanisms, the importance of counseling, and where to find useful mental health tools and resources. It was also announced that SCCC would be launching a public awareness campaign about SCD on historically black college and university campuses across the United States.

NHLBI Hosts Sickle Cell Disease Clinical Research Meetings 

Earlier this week, the National Heart, Lung, and Blood Institute (NHLBI) hosted its Annual Sickle Cell Disease (SCD) Clinical Research Meeting at the National Institutes of Health Campus in Bethesda, MD.  The three-day meeting provided a forum for investigators, practitioners, interested health care providers, and patients to discuss the process of ongoing clinical trials, hear presentations about new developments in scientific and clinical aspects of SCD, and interact with other investigators and NHLBI program staff in an informal setting.  The program included six symposia that focused on: 

  • Curative Therapies in SCD
  • Pain and New Approaches to Treat Complications with Blood Transfusion
  • SCD in Women and Reproductive Issues
  • Mental Health Across the Lifespan in SCD: What Can Data Tell Us
  • Care for the Older Adult with SCD
  • Developing Multi-Modal Therapeutic Options for SCD  

A number of SCDC members were in attendance and presented throughout the meeting.  NHLBI staff also presented on two of the Institute’s major initiatives: The Sickle Cell Disease Implementation Consortium and the Cure Sickle Cell Disease Initiative (CureSCi).  

Emergency Physicians and the Emergency Department SCD Coalition Host Summit   

The American College of Emergency Physicians and the Emergency Department Sickle Cell Care Coalition (EDSC3) hosted a Summit on August 16, 2018, on Improving Emergency Department Care for Sickle Cell Disease in Washington, DC. The goal of the summit was to identify concrete and specific actions to improve the care in emergency departments for children and adults living with sickle cell disease.

ADM Brett Giroir, MD, U.S. Assistant Secretary for Health, delivers the keynote during the Summit.

Sickle Cell Disease Bill Approved by Senate Committee 

On Wednesday, July 25, 2018, legislation (S. 2465) sponsored by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) to address issues related to sickle cell disease (SCD) was unanimously approved by the Senate Health, Education, Labor, and Pensions (HELP) Committee. This important legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Services Administration (HRSA) and authorizes the federal government to award data collection grants via the Centers for Disease Control and Prevention (CDC) to states, academic institutions, and nonprofit organizations to better understand the prevalence and distribution of heritable blood disorders such as SCD and their associated health outcomes and complications. 51 SCD stakeholder groups, including many SCDC member organizations, sent a letter to Chairman of the Senate HELP Committee, Senator Lamar Alexander (R-TN), urging the committee’s support for the bill, which must still be considered by the full Senate before differences are reconciled with similar legislation that passed the House earlier this year.

Are you a Patient or SCD Advocate? Complete ASH’s Sign Up Sheet 

If you are someone living with sickle cell disease (SCD), or a SCD advocate and are interested in staying informed about the American Society of Hematology’s SCD patient resources, communications, and more, please complete this sign up sheet so you can be notified as soon as these tools are released!

Explore NMDP’s Free SCD Education and Resources

The National Marrow Donor Program® (NMDP)/Be The Match® has a variety of free sickle cell disease (SCD) and transplant-related resources for patients and health professionals. 

Jason Carter Clinical Trials Program

The Jason Carter Clinical Trials Program (JCCTP) helps people with blood disorders find and join clinical trials. The free program offers: 

  • One-on-one telephone support from a clinical trial nurse to help navigate and search for clinical trials. 
  • A simple web-based search tool to find U.S based clinical trials that are enrolling. 
  • Easy-to-read educational resources for patients and families to learn about sickle cell treatment options and clinical trials. 
  • Financial assistance for travel expenses related to clinical trials. 

To learn more, contact Scott Kerwin, MN, RN, CCRC, CCRN: clinicaltrials@jcctp.org

Sickle cell disease Booth in a Box available for your next community event

Sickle Cell Disease Booth in a Box is a free toolkit that includes an array of patient-centered educational resources and giveaways to educate people about transplant for SCD. It can be used at community health fairs, conferences and other events. Reserve your Booth in a Box today

Questions about Booth in a Box? Contact Lensa Idossa, MPH at lidossa@nmdp.org.

ASH Guidelines on SCD Available for Public Comment

The American Society of Hematology (ASH) will be seeking comments on the draft clinical practice guideline: Sickle Cell Disease-Related Transfusion Support. Materials will be made available from August 20 - October 1, 2018 and can be found at www.hematology.org/Guidelines-Public-Comment. This will be the first of five forthcoming guidelines on SCD. Anyone is welcome to review the draft recommendations and submit comments, including ASH members, non-member physicians and researchers, allied professionals, representatives of medical societies, industry and insurance companies, patients, caregivers, and members of the public. Feedback received will be provided to the guideline panels for review. Comments will also be considered for implementation and dissemination efforts following publication, and future revision efforts. Please let your colleagues and friends know about this public comment period. If you use social media, you may create your own tweet using #ASHGuidelines. 

SCDAC/Pfizer National Research Program

The Sickle Cell Disease National Research Program was established in 2017 through a joint effort of the Sickle Cell Disease Association of Canada (SCDAC) and Pfizer Pharmaceuticals, in order to provide Canadian researchers an opportunity to conduct original research in specific research topic areas. These research topics contribute to SCDAC’s goal of improving outcomes for people living with sickle cell disease (SCD) and the eventual cure of the disease. Congratulations to the 2018-2019 grantees: 

  • Geneviève Mailhot, Vitamin D Supplementation for Children with SCD
  • Fiona Schulte, Pain in Adolescent and Young Adults’ Survivor of Hematopoietic Stem Cell Transplant, HSCT for SCD
  • Dr. Aisha Bruce, I See Your Strength - Building Upon Strong Foundations. Sharing Methods to Increase Resiliency with Caregivers of Children with SCD
  • Claire Arbitre, Pain Experience During Vaso-occlusive Crisis in Children and Teenagers with SCD

Learn more about the SCDAC National Research Program here.  

Upcoming SCD Events & Webinars


One Day Left to Join SCDAA’s Annual Walk with the Stars & Move-a-thon

The Sickle Cell Disease Association of America (SCDAA) is hosting its 5th Annual Walk With the Stars & Move-a-thon on August 18, 2018, at the scenic Canton Waterfront Park in Baltimore, MD. Walk With The Stars & Move-a-thon is one of SCDAA’s largest events dedicated to finding better treatments and a universal cure for sickle cell disease (SCD). This event is the only 5K benefiting SCD on a national level, creating more opportunities of impact for SCDAA’s 42 chapters across the United States. To date, SCDAA has raised over $540,000 from this event for better treatments and improvements in the quality of health for individuals, families and communities affected by SCD. Those who participate in this event will not only be walking and running, but jump roping, hoola hooping, and dancing to Zumba. For more information about corporate sponsorship opportunities and to register for the Walk, visit http://www.sicklecellnationalwalk.org.

Webinar for Health Professionals-Sickle Cell Disease: Shared Decision-Making and Clinical Trial Participation

Join the National Marrow Donor Program (NMDP) for a free continuing education webinar on September 12, 2018 from 1:00 p.m. – 2:15 p.m. ET. Lakshmanan Krishnamurti, MD, from Children’s Healthcare of Atlanta/Emory University, will discuss new insights on shared decision-making to address barriers to clinical trial participation among individuals affected by sickle cell disease (SCD). Lensa Idossa, MPH, from NMDP/Be The Match, will summarize initiatives of SCD patient advocacy organizations to help increase patient participation in clinical trials. See full webinar details for more information. This program is provided by the NMDP®/Be The Match® and the Sickle Cell Disease Association of America, Inc. (SCDAA). Continuing education credits are available for nurses, social workers and laboratory professionals. Register now.

Sickle Cell Disease Therapeutics Conference 

Global Blood Therapeutics (GBT) will host the 7th Annual Sickle Cell Disease Therapeutics Conference (SCDTC) at the Park Central Hotel in New York City on September 13, 2018.  This annual meeting brings together healthcare professionals, patients, community-based organizations and advocates, investors, policy makers and industry representatives to discuss topics important to the community along with the latest advancements and trends in treating sickle cell.  The conference is open to anyone with an interest in sickle cell. This year’s panelists include: W. Keith Hoots (National Heart, Lung, and Blood Institute (NHLBI)), Beverley Francis-Gibson (Sickle Cell Disease Association of America), Dominique Goodson (Sickle Cell Disease Community Forum), Dr. John J. Strouse (Duke University Medical Center) and Dr. Rosalyn Stewart (Johns Hopkins University School of Medicine) to name a few. For those who cannot attend in person, Sickle Cell Warriors has again exclusively partnered with GBT to livestream the conference via Facebook Live. It will be available to view here: www.facebook.com/SickleCellWarriors/.  For more information, please visit the official SCDTC website.  

HHS Webinar on Multi-Team Approach to Raise Awareness of Sickle Cell Disease

The Department of Health and Human Services, Heath Resources and Services Administration, Centers for Disease Control and Prevention, and the Georgia Department of Public Health will be hosting a webinar titled: Multi-Team Approach to Raise Awareness of Sickle Cell Disease on September 18, 2018

from 1:30 p.m.-3:30 p.m. ET. The purpose of the webinar is to: 

  1. Enhance understanding of the collaborative role of patients, clinicians, CBOs and faith-based organizations in sickle cell disease (SCD) management and education. 


2. Develop a better understanding of SCD and SCD management. 

  1. Increase awareness regarding the importance of blood donation and bone marrow registry participation amongst the African-American and Latino populations.

Register here

The SCDAA 46th Annual National Convention 

The Sickle Cell Disease Association of America’s (SCDAA) 46th Annual National Convention will take place October 13-18, 2018 in Baltimore, MD. This year’s theme is Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice. The SCDAA Annual National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD). The conference fosters the exchange of the latest scientific and clinical information related to the disease which is achieved through the offering of innovative symposia, training seminars, and interactive panel discussions. In addition, this year’s convention offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against SCD. The convention is aimed at individuals living with SCD and sickle cell trait, their family members, physicians, researchers, nurses, social workers, psychologists, and community health workers. Click here to find out more, and to register.  

FDA ASH Sickle Cell Disease Clinical Endpoints Workshop 

The U.S. Food and Drug Administration (FDA) and American Society of Hematology (ASH) will be co-hosting the Sickle Cell Disease (SCD) Clinical Endpoints Workshop on October 17-18, 2018, a one-time event that aims to identify opportunities to bring uniformity and standards to existing SCD endpoints, identify gaps, and propose development of new endpoints as a focus for future research.

The workshop will include seven panels on the following topics:

  • Patient reported outcomes (PROs) 
  • Pain (non-PROs)
  • Brain 
  • End organ considerations
  • Biomarkers
  • Endpoints related to curative therapies, including bone marrow transplantation, gene therapy, gene editing, and gene switching
  • Considerations of endpoints for low-resource settings

For more information about the workshop, click here. To be alerted as soon as registration goes live, make sure to follow @ConquerSCD on Twitter. 

Additional details will be forthcoming. If you have any questions please send them to Rusinel.amarante@nih.gov or Jessica.peterson2@nih.gov

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