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Sickle Cell Disease (SCD) Decision Aid
The purpose of this study is to gather decision making needs information from caregivers and patients with sickle cell disease (SCD) in order to develop a web-based decision aid tool. Study subjects will participate in interviews defining treatment decision making needs during which investigators will ask information about their SCD. Notes taken from these interviews will allow the research team to better understand current practice related to clinical practice and allow for better refinement of the decision aid tool. An additional group of participants will be asked to review the web-based Sickle Cell Decision Aid. Participants will be asked to describe thoughts about the site, including but not limited to ease of navigation, content and construction. This study will provide information for the conduct of a randomized controlled trial for the use of a web based decision aid to give patients with sickle cell disease and parent/legal guardian of children with sickle cell disease accurate information about risks and benefits of therapies and enable them to make decisions based on their individual values and preferences.
Details
| Lead sponsor | Emory University |
|---|---|
| Phase | NA |
| Status | COMPLETED |
| Enrolment | 222 |
| Start date | Thu May 15 2014 00:00:00 GMT+0000 (Coordinated Universal Time) |
| Completion | Tue Mar 31 2015 00:00:00 GMT+0000 (Coordinated Universal Time) |
Conditions
- Sickle Cell Disease
Interventions
- Qualitative Interviews Decisional Needs Assessment
- Sickle Cell Decision Aid