SCD-PROMIS: A Software Platform to Enhance Self-efficacy and Patient-provider Engagement for Patients With Sickle Cell Pain

Completed · Not applicable

Conditions studied: Sickle Cell Disease, Anemia, Anemia, Hemolytic, Anemia, Sickle Cell, Hematologic Diseases

In brief

The overall goal of the project is to reduce pain-related, 30-day readmission rates for sickle cell disease (SCD) patients. The investigators want to see if a mobile phone application (app) can help decrease the need for repeat admission to the hospital because of sickle cell pain.

Key facts

Study ID

NCT03006718

Run by

Julia Finkel

People needed

150

Starts

2016-11-01

Expected to finish

2019-09-01

Last updated by the study team

2021-02-24

Who can join

Age: 8 and older, up to 21. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Participants with Sickle Cell Disease (SCD) (HbSS, HbSC, HbSβ0 thalassemia, HbSβ+ thalassemia, HbSOArab) admitted to the hospital for vaso-occlusive crisis (VOE)-related pain within the age range of 8 - 21 years.
• Ability to provide informed consent/assent, comply with study related procedures, evaluations, and follow-up. In the event that a patient does not have a smart mobile device (i.e., one that can support the study application), one will be provided for the patient. Patients younger than the age of 11 years may use their parents phone if they do not have one. If a patient has a smart mobile device but their parent does not want them to use the device for the study, the patient may use their parent's phone instead.
• Parent of participants with SCD (HbSS, HbSC, HbSβ0 thalassemia, HbSβ+ thalassemia HbSOArab) admitted to the hospital for vaso-occlusive crisis (VOE)-related pain within the age range of 8 - 17 years who has assented to participate in the study.
• Ability to provide informed consent, comply with study related procedures, evaluations, and follow-up. In the event that a parent does not have a mobile device, one will be provided for the duration of the study.

You may not qualify if…

• Inability to give informed consent/assent as determined by the investigators
• Patients with SCD who were admitted for reasons other than VOE-related pain
• Parents of patients with SCD who were admitted for reasons other than VOE-related pain or do not assent to participate

Where it is running

• Children's National Hospital — Washington D.C., District of Columbia, United States

Full record on ClinicalTrials.gov

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