SCDC Update

Celebrate International Clinical Trials Day!

International Clinical Trials Day is observed on May 20th every year to mark the anniversary of the first randomized clinical study, which was conducted by James Lind in 1747. On Saturday, May 20, 2023, take a moment to celebrate the accomplishments of clinical research professionals in the sickle cell disease (SCD) field and learn about clinical research advancements made across the globe. Listen to this episode of the American Society of Hematology’s (ASH) podcast, Bringing Sickle Cell Disease to Life, entitled, “Finding a Purpose Through Sickle Cell Disease Research” to learn from experts Drs. Wally Smith and Betty Pace about their paths to conducting clinical research and training opportunities available to sickle cell researchers today. Learn more here.

SCDC “Global Access to Sickle Cell Research & Clinical Trials” Webinar Series Recordings

Last year, the Sickle Cell Disease Coalition (SCDC) hosted a webinar series on “Global Access to Sickle Cell Research & Clinical Trials,” which featured the efforts and perspectives of clinical researchers and institutions, and individuals living with SCD from around the world. Learn more here.

ASGCT Clinical Trials Finder

The American Society of Gene & Cell Therapy (ASGCT) website includes a clinical trials finder, which offers a curated list of applicable gene and cell therapy clinical trials for people living with diseases, like sickle cell. Individuals may filter their search by location, specific diagnosis, treatment modality, or enrollment status. Learn more here.

SCDAA Clinical Trials Finder

The Sickle Cell Disease Association of America (SCDAA) developed its Clinical Trial Finder in partnership with Forma Therapeutics. The Clinical Trials Finder is a centralized, simple to navigate resource that helps SCD warriors, their caregivers, and families find clinical trials. Learn more here.

SCD Legislation Reintroduced: “Van Hollen, Booker, Lee Introduce Bill to Improve Access to Care Sickle Cell Disease Patients”

This month, U.S. Senators Chris Van Hollen (D-MD), Cory Booker (D-NJ), and Congresswoman Barbara Lee (D-CA) reintroduced the Sickle Cell Care Expansion Act, which, if passed, would strengthen the medical workforce that treats sickle cell and fund services for adults living with SCD. Learn more here.

Sick Cells Community Toolkit & Public Comments Submitted on the 2023 ICER Draft Evidence Report: “Gene Therapies for SCD”

Sick Cells created a toolkit to help members of the SCD community review and share feedback on the Institute for Clinical and Economic Review (ICER) draft evidence report on “Gene Therapies for Sickle Cell Disease.” Learn more here.

Sickle Cell Disease News Article: “Prime Editing Shows Potential to Correct Sickle Cell- Causing Mutations”

Sickle Cell Disease News published an article discussing prime editing, a new gene-editing approach which selectively corrects the genetic deficit underlying SCD in stem cells collected from SCD warriors. This new gene-editing approach may be safer than others, but it is more time-intensive. Learn more here

Ghana News Agency Article: “Navrongo Research Diagnosis 100 Children with Sickle Cell Disease”

Ghana News Agency published an article highlighting the Navrongo Health Research Center’s (NHRC) point-of-care SCD testing efforts for SCD warriors below the age of five; so far, the Center has diagnosed more than 100 local children with SCD. Learn more here.

SCAGO French Website Launch

The Sickle Cell Awareness Group of Ontario (SCAGO) officially launched their French website, demonstrating the organization’s commitment to equitable access to quality healthcare and resources. Learn more here.

Sickle Cell Community Consortium Spanish Resource: “A Guide to Living with Sickle Cell Disease”

This booklet is written in Spanish and discusses the different types of SCD, treatment options, and tips to advocate for yourself. Learn more here.

IASCNAPA SCD Nursing Bootcamp Accepting Applications

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) SCD Nursing Bootcamp aims to promote nursing excellence nationally and globally utilizing a train the trainer model. This training will be held from October 30 - November 3, 2023, at the UTHSC College of Nursing. Applications are due by July 1, 2023. Learn more here.

IASCNAPA SCD Warrior Graduate Scholarship Program

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a college scholarship program to assist U.S. SCD warriors. Applicants for IASCNAPA’s $1,500 scholarships must be enrolled in, or have been accepted by, a recognized and accredited post- secondary school, including college, university, or trade school. Applications are due by July 1, 2023. Learn more here.

KERA News Article: “Questions Remain as Tarrant County Explains Decision Not to Proceed with Review into Jail Death”

This article highlights an investigation into the Tarrant County Medical Examiner Office’s autopsy of Robert Miller, a man with sickle cell trait who died in jail custody in 2019 by what medical examiners determined was natural causes due to his sickle cell trait status. This cause-of-death determination ignores other information that immediately precluded Mr. Miller’s death and directly conflicts with scientific evidence and expert opinion communicated through the American Society of Hematology’s (ASH) official Position Statement on Sickle Cell Trait. Learn more here.

23andMe Press Release: “Morehouse School of Medicine, Sickle Cell Foundation of Georgia, and 23andMe Launch Sickle Cell Carrier Status Awareness Program”

This press release highlights the collaborative Sickle Cell Carrier Status Awareness Program, which aims to screen more individuals for sickle cell, increase awareness on carrying a sickle cell-related trait, and offer resources to individuals living with a sickle cell trait or SCD. Learn more here.

Sick Cells Blog: “Mental Health is Wealth”

In honor of May being Mental Health Awareness Month, Sick Cells created a blog post on the importance of mental health for individuals living with SCD. This blog highlights SCD warriors’ stories and their experiences dealing with mental health challenges.. Learn more here.

SCAGO Webinar Recording: “Pain Assessment and Management in Pediatric and Adult Patients with SCD”

In this webinar organized by the Sickle Cell Awareness Group of Ontario (SCAGO), Dr. Marko Erak, an emergency doctor at Humber River Hospital, shares crucial tips on how to assess and manage pain in children and adults living with SCD. Learn more here.

SHM Resource: SCD Implementation Guide

The Society of Hospital Medicine (SHM) released a SCD Implementation Guide to equip hospitalists and other hospital clinicians with the most optimal strategies for effectively treating SCD. Along with the Implementation Guide, SHM released two educational modules for hospitalists on the presentation of SCD and transitions of care for people with SCD. Learn more here.

UPCOMING SCD EVENTS

ASGCT Annual Meeting (5/16/23-5/20/23)

The American Society of Gene and Cell Therapy (ASGCT) Annual Meeting will take place from May 16 – May 20, 2023, in Los Angeles, California. ASGCT’s Annual Meeting offers professionals in gene and cell therapy a venue to cultivate meaningful discussion, share knowledge, and build relationships between patient advocates, clinicians, and researchers. ASGCT is also offering eligible non-profit employees, caregivers, and sickle cell warriors who engage in patient advocacy free registration to the Annual Meeting. Register to attend here.

Public Health Genetics & Genomics Week Webinar: “Introduction to Cystic Fibrosis and Sickle Cell Disease Newborn Screening” (5/18/23)

The National Coordinating Center (NCC) for the Regional Genetics Networks will host a webinar titled, “Introduction to Cystic Fibrosis and Sickle Cell Disease Newborn Screening” on May 18, 2023, from 1:00pm – 2:00pm ET. This program will honor Public Health Genetics and Genomics Week by highlighting newborn screening and how it works for cystic fibrosis and SCD. Register to attend here.

FWGBD Webinar: “Contraception, Thrombosis, & Sickle Cell Disease: Considerations for Optimizing Comprehensive Care” (6/12/23)

The Foundation for Women and Girls with Blood Disorders (FWGBD) will hold a webinar highlighting contraception, thrombosis, and SCD on June 12, 2023, at 1:00pm ET. This program will feature Drs. Lydia Pecker and Andrea Roe. Register to attend here.

Save the Date: SCAGO Annual Hope Gala (6/17/23)

The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its Annual Hope Gala on June 17, 2023. This event will bring a variety of stakeholders together to raise awareness and funds for SCD. Save the date and stay tuned for more information!

Save the Date: SCCC 10th Annual Warrior’s Convention

The Sickle Cell Disease Community Consortium (SCCC) will hold its 10th Annual Warrior’s Convention in July 2023. This event will be hosted by a partnership of sickle cell CBOs, patients, caregivers, and advisors, and aims to empower the SCD community. Stay tuned for more information to come!

Save the Date: NHLBI Annual Sickle Cell Disease Meeting (8/14/23-8/16/23)

The National Heart, Lung, and Blood Institute (NHLBI) will hold its Annual Sickle Cell Disease Meeting from August 14 – August 16, 2023. Save the date and stay tuned for more information!

Save the Date: SCDAA Annual National Convention (10/11/ 23-10/14/23)

The Sickle Cell Disease Association of America (SCDAA) will hold its Annual National Convention from October 11 – October 14, 2023. Save the date and stay tuned for more information!

Save the Date: 2023 ASCAT Conference (10/25/23-10/28/23)

The 2023 Annual Scientific Conference on Sickle Cell and Thalassaemia (ASCAT) will be held from October 25 – October 28, 2023, in London, England. Save the date and stay tuned for more information!

Save the Date: SCAGO 3rd Annual Sickle Cell Summit (11/03/23-11/04/23)