A Self-Management Intervention for Youth With Sickle Cell Disease and Their Families: Phase I

Completed

Conditions studied: Anemia, Sickle Cell

In brief

This study is being conducted to test an intervention for children and adolescents ages 8-17 years with sickle cell disease and their families. In the first phase of this study, key informant interviews are being conducted with health care providers and children ages 8-17 with sickle cell disease and their primary caregivers. Participants are asked to review the intervention and provide feedback that will inform revision to the intervention.

Key facts

Study ID

NCT03069430

Run by

Medical University of South Carolina

People needed

44

Starts

2016-08-01

Expected to finish

2017-03-31

Last updated by the study team

2018-05-11

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Children ages 8-17 years and their primary caregiver
• Child with SCD as indicated by self/parent report or report from MUSC Pediatric Sickle Cell clinic staff
• Child has been seen at the MUSC Pediatric Sickle Cell clinic for at least 6 months
• MUSC Pediatric Sickle Cell clinic staff report preventive recommendations are followed by child/caregiver
• Health care providers:
• Age 18 years or older
• Healthcare professional with at least 6 months' experience caring for children with SCD

You may not qualify if…

• Non-English speaking
• Inability or unwillingness to participate in a one-on-one interview
• Inability or unwillingness of parent/caregiver or health care provider to give informed consent and of child to give assent

Where it is running

• Medical University of South Carolina — Charleston, South Carolina, United States

Full record on ClinicalTrials.gov

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