Using a Family Advisory Council to Understand the Informational Needs of Prospective Gene Therapy Trial Participants: An Interview with the Co-PIs of the SCDGENE CERA Working Group

Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90% of U.S. patients self-identify as Black and experience neglect as a result of structural racism, until recently, the condition has received very little research funding and minimal attention from the medical research community. Recent advances in human genetics have reinvigorated interest in the genetic underpinnings of SCD and the potential to “cure” it with novel genetic therapies.

Integrating Nurse Champion Model for Group Reproductive Genetic Counseling for Sickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation Science Study

PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure that risk results are effectively communicated by healthcare workers to those at-risk couples and their families. These are also important within the context of culture and health literacy because health beliefs and attitudes of the general public have a significant impact on health seeking behaviors that substantially influence reproductive decisions made by individuals and families.