Genomics of Exertional Related Events (EREs)
Associated with Sickle Cell Trait

Exertion Related Events (EREs) such as exercise-related muscle damage, heat stroke, and collapse have been observed in individuals with Sickle Cell Trait (SCT). The Consortium of Health and Military Performance (CHAMP), Uniformed Services University (USU) is conducting a study to better understand the association between SCT and EREs. This study will search for genetic markers of EREs in individuals with SCT.

We invite African-American SCT positive men and women and their family members, with or without a history of ERE, to participate.

Volunteers must be between the ages of 18 and 80.

Participants will be required to do the following:

  • Sign the Informed Consent Document (ICD) and HIPAA authorization form to grant access to medical information related to SCT and ERE
  • Fill out a questionnaire, including a brief medical history
  • Give no more than 25 mL (less than 2 tablespoons) of bloodUpon completion of all study requirements, participants will be compensated with a $25 gift card.

Our Goals:

Collect scientific data needed to guide more evidence-based and prudent treatment and policy decisions that impact the Sickle Cell Trait (SCT) population in both civilian and military sectors.

Our Plans:

Enroll African American men and women between ages 18-80 who have SCT:

300 SCT carriers who have had Exertional- Related Events (EREs):

  • Exertional Rhabdomyolysis
  • Exertional Heat Stroke
  • Exertional Collapse

150 SCT carriers who have never had EREs despite their rigorous exercise regimen

Enroll 150 immediate family members of these SCT carriers, with and without ERE

Identify and compare genetic variants between SCT carriers with ERE and without EREI

How you can contribute:

Participate by donating blood

Completing a questionnaire

Providing brief medical history

What we will do:

Extract genetic material

Screen whole genome

What we expect to find:

Genetic variants associated with EREs in SCT carriers that will help us develop markers to determine who may be susceptible to EREs prior to an event.

Contact:

CHAMP, USU

Call: 240-479-9514 or

email: SCTStudy- ggg@usuhs.edu

Dr. O’Connor: francis.oconnor@usuhs.edu

Webinar Series

  • When COVID-19 emerged in year 2020, there was an immediate need to understand COVID-19 outcomes among individuals with sickle cell disease (SCD).

  • Addressing School-Related Inequities for Individuals Living with Sickle Cell Disease During the COVID-19 Pandemic and Beyond

  • This presentation will give a broad overview of the perceived hesitations, current data, and future direction of physical activity in sickle cell disease.

  • Claudine Mathews from the UK’s National Health Service, talks about nutrition. Integrating Nutrition as a management option in Sickle Cell Disease: A Call to Action

  • Community Engaged Education Materials for SCD Gene Therapy

  • Cayenne Wellness Center, Sickle Cell Consortium Axis Advocacy and SCAASF FREE AND OPEN TO THE ENTIRE SICKLE CELL COMMUNITY

  • New Data from CA SCDC: Sickle Cell Disease Activities October 2020 – January 2021

  • Advancing World-Class Science and Patient Engagement: CIRM’s Sickle Cell Disease Portfolio CIRM’s research programs.

  • End-of-Life Healthcare Utilization in Sickle Cell Disease and the Palliative Care Model

  • SCDC Program Findings and Activities + Future Directions

  • Diversifying the Blood Donor Pool: The need for African American donors to support Sickle Cell Patients

  • Adult Health Care for Sickle Cell Disease: How to Make it Better

  • This webinar is on collaboration and community in sickle cell. Dr. Nik Abdul Rashid and Ms. Linetta Barnes from Nevada will present on how a clinical group and community-based organization work together to improve care and quality of life for people living with sickle cell disease.

  • What’s new at the Sickle Cell Disease Association of America (SCDAA) ? Presented by Ms. Beverley Francis-Gibson, SCDAA President and CEO, and Dr. Biree Andemariam, SCDAA Chief Medical Officer

  • Stepping Up into Adult Care: The Sickle Cell Trevor Thompson Transition (ST3P-UP) Project. Presented by Dr. Ifeyinwa (Ify) Osunkwo, Carolinas HealthCare System, and Dr. Raymona Lawrence, Georgia Southern University.

  • Community Health Workers and Mobile Apps for Transition from Pediatric- to Adult-focused Sickle Cell Care. Presented by Dr. Kim Smith-Whitley, Clinical Director of the Division of Hematology and Director of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia.

  • Innovations in Health Care Transition from Pediatric to Adult Care. Nov 1, 2018 10:00 AM PDT. Peggy McManus, MHS, and Patience White, MD, MA, from the “Got Transition?” program will speak about innovations in health care transition from pediatric to adult care. Register for Webinar ->

  • Wally R. Smith, MD is the Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University (VCU). He also serves as the Vice-Chairman for Research of the Division of General Internal Medicine and is the former Scientific Director of the Center on Health Disparities at VCU. In addition, he is a member […]

  • Michigan’s plan for sickle cell disease across the lifespan: Lessons learned for California. The Michigan Department of Health and Human Services created a state action plan for sickle cell in 2015 that is being used as a model plan by the federal Health Resources & Services Administration.

  • Come hear lessons learned and recommendations stemming from the National Institute for Children’s Health Quality (NICHQ)-led Sickle Cell Disease Treatment Demonstration Program. The national program focused on improving the quality and access to care for patients with sickle cell disease.

  • Neuropathic pain: Can stress and pain itself cause a sickle crisis? by Dr. Thomas Coates. Tuesday, November 14, 2017, from 10-11:30 am PDT. Dr. Coates is the section head of Hematology in the division of Hematology Oncology at Children’s Hospital Los Angeles, and the University of Southern California.

  • Reducing transfusion complications and other surveillance-supported efforts in hemoglobin disorders. By Dr. Angela Snyder, Dr. Jane Branscomb and Dr. Ross Fasano.

  • Evaluating and Addressing Challenges to Optimal Sickle Cell Disease Care, Within the Health Literate Care Model. Dr. Marsha Treadwell, Clinical Scientist at the UCSF Benioff Children’s Hospital Oakland.

  • A Case Study: A few dedicated professionals discuss how and why they created a new county clinic in South Los Angeles.

  • Translating Health Services Research in Sickle Cell Disease to Policy.

  • Enhancing Access to care for Sickle Cell Disease in South Carolina.

  • Emerging Treatments in SCD.

  • Older Adults and Sickle Cell Disease.

  • Project Introduction, presented by Susan Paulukonis and Mary Hulihan.