Motivations, Expectations, and Decision-making of Sickle Cell Patients in Clinical Research

Completed

Conditions studied: Sickle Cell Disease

In brief

Background: Sickle cell disease is an inherited blood disorder. People with this disease have a problem with their hemoglobin. That is a protein in red blood cells that carries oxygen in the body. Some people with this disease are enrolled in research at NIH. Researchers want to learn more about the thoughts and opinions of those people. This may improve the way researchers explain clinical studies, risks, and benefits to people with the disease. Objective: To learn about the motivations, decisions, and experiences in clinical research of people with sickle cell disease. Eligibility: Adults ages 18 and older who have sickle cell disease. They must be in an NIH study on this condition. They must have been invited to join either a gene therapy or peripheral blood stem cell transplantation study. Design: Participants will have 1 interview. It will be done in a quiet room in the NIH Clinical Center or by video call. It will take about 60 minutes. The interview will be audio-recorded if the participant agrees. Participants will be asked about: * Their experiences with and thoughts on sickle cell disease * Their decision to participate in clinical research * Factors that may have affected their decision to participate. These may include family, disease history, or faith. Participants may complete a few brief questionnaires.

Key facts

Study ID
NCT03709303
Run by
National Institutes of Health Clinical Center (CC)
People needed
27
Starts
2018-10-29
Expected to finish
2020-08-28
Last updated by the study team
2020-09-01

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may not qualify if…

Where it is running

Full record on ClinicalTrials.gov

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