Home-based Assessment of PRO Measures in SCD Using A Smartphone App Platform: A Feasibility Study

Completed · Not applicable

Conditions studied: Sickle Cell Disease, Sickle Cell Hemoglobin C, Sickle Beta Zero Thalassemia, Sickle B+ Thalassemia

In brief

The overarching goal of this proposal is to identify modifiable behavioral strategies based on patient-reported outcomes (PROs) and health-related quality of life (HRQOL) that will improve hydroxyurea (HU) adherence among adolescents and young adults with sickle cell disease (SCD). In this proposed study, we intend to test the functionality of a PROs-toolbox feature, which will be integrated into our existing smartphone application platform (SCD-app), over a 24-week period in a cohort of SCD patients and their caregivers.

Key facts

Study ID

NCT04678037

Run by

Ann & Robert H Lurie Children's Hospital of Chicago

People needed

40

Starts

2017-04-04

Expected to finish

2019-07-21

Last updated by the study team

2020-12-21

Who can join

Age: 12 and older, up to 25. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Age 12 years or older at the time of study enrollment;
• SCD diagnosis (all genotypes) confirmed by hemoglobin electrophoresis;
• Own or have access to a smartphone or a tablet; and
• Speak and read English.

You may not qualify if…

• Patients or caregivers with cognitive impairment;
• Patients or caregivers physical impairment; and
• Patients or caregivers who will not be able to complete study assessments.

Where it is running

• Ann & Robert H. Lurie Children's Hospital of Chicago — Chicago, Illinois, United States

Full record on ClinicalTrials.gov

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