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

NCT03709303 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 27

Last updated 2020-09-01

No results posted yet for this study

Summary

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.

Conditions

Sponsors & Collaborators

  • National Institutes of Health Clinical Center (CC)

    lead NIH

Principal Investigators

  • Christine Grady, Ph.D. · National Institutes of Health Clinical Center (CC)

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2018-10-29
Primary Completion
2019-08-31
Completion
2020-08-28

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03709303 on ClinicalTrials.gov