Sickle Cell Disease Community
Together, We Can Improve Lives
Research Shaped by the Sickle Cell Disease Community
As a member of the sickle cell disease community (SCD), your insight is valuable to researchers, doctors, and the companies that sponsor research. The ASH Research Collaborative™ (ASH RC) established Community Advisory Boards (CABs) so you can learn more about SCD research taking place and share your thoughts and experiences. Your input helps ensure research is designed to meet the needs of people affected by SCD.
The CABs are affiliated with research sites of the SCD Clinical Trials Network (SCD Network). Members are individuals living with SCD, parents, partners, other loved ones, and community-based organizations and advocates. They are the connection between the local SCD community and the researchers at their local SCD Network sites.
"I am confident the work of the Sickle Cell Disease Learning Community and Data Hub will improve the quality of care and promote more equitable care for sickle cell disease patients."
- Rogelle Hackworth, care provider and advocate for individuals with sickle cell disease
“Needed change must involve the voice of the patient. What better way to impact care for myself and others than to have a seat at the table?”
- Kevin Wake, an individual living with sickle cell disease, member of the Sickle Cell Disease Learning Community Design Work Group, and President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest.
Spotlight on the National Community Advisory Board (CAB)
Each local CAB selects two representatives to serve as members of the National CAB. National CAB representatives assist the ASH RC in improving research by:
- Sharing information from their local CAB meetings with the National CAB.
- Regularly updating their local CAB about matters discussed during National CAB meetings and about other SCD Network activities.
- Participating in the community protocol review process.
- Providing community input on educational materials and resources.
Community Protocol Review
Participating in a community protocol review is one of the activities in which members of the National CAB participate. When a study is being planned, the research team will develop a detailed document, called a protocol. The protocol outlines the medical question (or questions) the researchers want to answer. It also explains the reason the question is being studied and how the researchers plan to structure the study to answer the question. The protocol includes information about who is eligible to join the study and the number of required visits and procedures.
Feedback provided by National CAB members during the community protocol review is shared with researchers to help make sure the research study is designed in a way that works for the community being asked to participate. Community reviewers help identify questions potential participants and families might have about the research and issues that might keep them from participating. The goal is to remove barriers to participating in research and provide the information the SCD community needs to make decisions about participating in research.
Members of the National CAB receive additional training to prepare them to participate in the community protocol review.
The CAB is a Safe & Supportive Space for Members
CAB members should be supportive of their fellow members and have knowledge of what it is like to live with SCD. They must be willing to discuss their experiences and learn more about clinical research.
If you’re interested in joining a local CAB, please click the button below to receive more information.
Join a Local Community Advisory Board (CAB)
The ASH RC is always interested in meeting members of the community who would like to serve on a local CAB. The following individuals are eligible:
Adults, teens, or adolescents living with SCD.
Parents of children living with SCD.
Caretakers or loved ones, such as partners or spouses.
People who work with the local SCD community.
Parents of children living with SCD.
Caretakers or loved ones, such as partners or spouses.
People who work with the local SCD community.
Serving on a local CAB is a volunteer position. CAB members are asked to:
Participate in a training about how to serve on the CAB.
Participate in and contribute to CAB meetings (in person or virtual) four to six times a year.
Provide guidance about the needs and concerns of the SCD community to the SCD Network and researchers who are designing research studies.
Share their own experiences and information about how community members experience clinical research.
Help SCD Network staff and researchers develop tools that will increase community participation and trust in research.
Share information about research that is discussed during CAB meetings with their local community.
Help plan and execute CAB-organized community events.
Participate in and contribute to CAB meetings (in person or virtual) four to six times a year.
Provide guidance about the needs and concerns of the SCD community to the SCD Network and researchers who are designing research studies.
Share their own experiences and information about how community members experience clinical research.
Help SCD Network staff and researchers develop tools that will increase community participation and trust in research.
Share information about research that is discussed during CAB meetings with their local community.
Help plan and execute CAB-organized community events.
Get Involved!
Working together with the sickle cell disease community, we are striving to make research more accessible. Please visit the Sickle Cell Disease Community section of our website to learn more.
ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2018 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology.