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NCT03709303

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

Completed Last updated 1 September 2020
What this trial tests

trial in Sickle Cell Disease in 27 participants. Completed in 28 August 2020.

Timeline
29 October 2018
Primary endpoint
31 August 2019
28 August 2020

Quick facts

Lead sponsorNational Institutes of Health Clinical Center (CC)
StatusCompleted
Study typeOBSERVATIONAL
Enrollment27
Start date29 October 2018
Primary completion31 August 2019
Estimated completion28 August 2020
Sites1 location across United States

Conditions studied

Sponsor

National Institutes of Health Clinical Center (CC)

Who can join

18 and older, any sex, with Sickle Cell Disease. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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.

Publications & conference data

No peer-reviewed publications indexed yet for this trial. Completed trials usually publish results within 12-18 months.

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Other recruiting trials for Sickle Cell Disease

Currently open trials in the same condition.

Other National Institutes of Health Clinical Center (CC) trials

Trials by the same sponsor.

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Data sources for this page

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