Sickle Cell Disease Research Network
Facilitating Sickle Cell Disease Research to Improve Clinical Outcomes
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 Research 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.
- Providing community input on educational materials and resources.
- Participating in the community protocol review process.
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.
ASH RC Living with SCD Data Hub Report
NCAB members play a central role in creating the Living with SCD Data Hub Report, providing input on priorities, language, and presentation to ensure the report reflects the real-world experiences and perspectives of people living with sickle cell disease.
Join a Supportive Community Shaping the Future of SCD Research & Care
We’re Looking for Voices Like Yours!
As a member of one of our local CABs, you’ll join a supportive group of people who understand what it’s like to live with and care for someone with SCD. We invite you to share your experiences and discover the innovative clinical research being conducted in our Network that’s transforming SCD care. Together, we can improve lives of those most affected by SCD.
Interested in joining a local CAB in our Network?
Click the button below to learn more!
Join a Local Community Advisory Board (CAB)
Are you passionate about improving the lives of people living with sickle cell disease (SCD)? The ASH Research Collaborative® (ASH RC) invites you to bring your voice and lived experience to a local CAB within our Research Network. Your insights ensure that SCD research is guided by the voices of the community it represents.
We welcome:
Adults, teens, or adolescents living with SCD.
Parents of children living with SCD.
Caretakers or loved ones (partners, spouses, and family members).
Anyone working closely with the local SCD community (advocates).
Parents of children living with SCD.
Caretakers or loved ones (partners, spouses, and family members).
Anyone working closely with the local SCD community (advocates).
By joining, you’ll volunteer time to:
Participate in engaging CAB meetings (in-person or virtual) at least 4 times each year.
Share your experiences and insights to guide researchers on what matters most to the SCD community.
Help build trust and connection between researchers and our community by developing tools that encourage participation in research.
Share your experiences and insights to guide researchers on what matters most to the SCD community.
Help build trust and connection between researchers and our community by developing tools that encourage participation in research.
Get Involved!
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 2017 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology. Learn more about ASH RC