United to Conquer Sickle Cell Disease

SCDC Update, July 2020


 

Continue to Spread the Word about Blood Donations

Thanks to many of you for joining the Sickle Cell Disease Coalition (SCDC) on World Sickle Cell Day to spread awareness about the importance of giving blood to ensure there is sufficient supply for individuals living with sickle cell disease (SCD) amid the pandemic.  We appreciate all of your help to spread the word around the world about this critical issue and urge you to continue to encourage blood donations throughout your networks.

ASH Releases New Clinical Practice Guidelines on Management of Pain in Sickle Cell Disease

On June 19, 2020, the American Society of Hematology (ASH) published Guidelines for Sickle Cell Disease (SCD): Management of Acute and Chronic Pain in Blood Advances. These evidence-based guidelines help support patients and health care professionals in pain management decisions for children and adults with SCD.  ASH is planning to release five SCD guideline chapters in total.  In addition to the pain guidelines, the following chapters are also available.  

The last chapter on transplantation will be published later in 2020.  Learn more about these guidelines, the development process, and find additional resources by visiting ASH’s website.

Recording Available of Webinar on Addressing the Global Burden of SCD During Pandemic and Beyond 

On June 29, 2020, the United States Department of Health and Human Services, in partnership with the American Society of Hematology and SickleinAfrica, and with the participation of the World Health Organization, hosted a webinar on “Addressing the Global Burden of Sickle Cell Disease During the COVID-19 Pandemic and Beyond.”  In February 2020, global stakeholders came together at the World Bank Headquarters in Washington, DC to initiate the Global Coalition on SCD which aims to develop, organize, and implement a global multi-sectoral approach to combatting SCD.  The webinar highlighted current knowledge on the impact of COVID-19 on health care systems and access to care for individuals living with SCD. The webinar also included a discussion on the next steps of the Coalition.   The recording for the webinar can be found here.

ASH and PerkinElmer Announce Global Collaboration to Help Combat SCD

PerkinElmer, Inc., a global leader committed to innovation for a healthier world, announced a collaboration with the American Society of Hematology (ASH) to support a new effort to increase capacity for newborn screening, education, and clinical interventions for SCD in sub-Saharan Africa.  Through this collaboration, PerkinElmer and ASH will also enhance advocacy through the Consortium on Newborn Screening in Africa (CONSA), a collaboration with African hematologists, public health authorities, and ASH dedicated to studying the benefits of newborn screening and early therapeutic interventions for SCD. CONSA introduces standard-of-care practices for screening and early intervention therapies (such as antibiotic prophylaxis and immunizations) with plans to screen 10,000-20,000 newborns per year in each sub-Saharan country and provide clinical follow-up for babies who screen positive for SCD.

Stay Connected with the ASH Research Collaborative

The ASH Research Collaborative (ASH RC) recently launched a revamped websiteand also new ASH RC Newsletter.  Stay abreast of the two core elements of the ASH RC –its Data Hub and Sickle Cell Disease Clinical Trials Network – by visiting the websiteand signing-up for their newsletter.

Visit New Website to Learn about Gene Therapy 

Bluebird bio recently launched a new website called genehomeas a source to learn about gene therapy.  As the field of gene therapy continues to evolve, genehome is a go-to source for comprehensive, understandable, and unbiased education. Gene therapy has the potential to treat many diseases, but the science behind it is not always easy to understand.

SCD AND COVID-19

CDC Adds SCD to List of People of Severe Risk of COVID-19

In late June, the Centers for Disease Control and Prevention added sickle cell disease (SCD) to the list of conditions that are at increased risk of severe illness from COVID-19.  View their webpageabout extra precautions individuals with SCD can take during COVID-19.

SECURE-SCD Registry Group Article on Early Findings of COVID-19 in Individuals with SCD.

An early release version of the article entitled Coronavirus Disease among Persons with Sickle Cell Disease (SCD), United States, March 20–May 21, 2020 was recently published in the Centers for Disease Control and Prevention’s Emerging Infectious Disease Journal .  The article, authored by the SECURE-SCD Registry Group from the Medical College of Wisconsin, reports that among 178 persons with SCD in the United States who were reported to an SCD–coronavirus disease case registry, 122 (69%) were hospitalized and 13 (7%) died.  Learn more about the Secure-SCD Registry here.

SCD and COVID-19 Resources 

The following links are frequently updated with timely information for the community and providers.

UPCOMING SCD EVENTS

NHLBI Annual Sickle Cell Disease Meeting

The National Heart, Lung, and Blood Institute’s (NHLBI) Division of Blood Diseases & Resources’ Annual Sickle Cell Disease (SCD) Meeting will be held virtually beginning on August 10, 2020 and ending on August 12, 2020.  The three-day meeting provides a yearly forum for investigators, practitioners, and interested health care providers to discuss the progress 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. To learn more about the meeting and register, please click here.  

Virtual Sickle Cell Disease Therapeutics Conference on September 15, 2020

Global Blood Therapeutics (GBT) and the Sickle Cell Disease Association of America (SCDAA) are excited to announce that the 9th Annual Sickle Cell Disease (SCD) Therapeutics Conference (SCDTC) has been scheduled for Tuesday, September 15 starting at 9:00 AM ET.  SCDAA’s President and CEO Beverley Francis-Gibson will host this event virtually.  This annual event convenes key SCD stakeholders focused on discussing issues impacting the community, including the latest advancements and trends in treating sickle cell.  Conference attendees will hear from innovative industry leaders, patients, physicians, community-based organizations and biotech companies.  This year’s moderators include: Dr. Biree Andemariam and Mary Bentley LaMar to name a few.

This event is open to anyone with an interest in sickle cell and there will be multiple ways to attend!  Sickle Cell Warriors has again exclusively partnered with GBT to livestream the conference via Facebook Live, YouTube, and Sickle Cell Warrior’s website.  To learn more about the SCDTC or to register (U.S. only) visit scdconference.com. #SCDTC.

Save the Date - SCDAA’s 48th Annual National Convention 2020 Is Going Virtual

Given the current uncertainty regarding COVID-19 and its implications for attendee safety and travel, as well as for public health concerns, the Sickle Cell Disease Association of America’s (SCDAA) 48th Annual National Convention is moving to a virtual gathering on October 14-17, 2020.  Click here for more information.

Spread the Word

The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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