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

NACompletedINTERVENTIONAL
Enrollment

150

Participants

Timeline

Start Date

November 30, 2016

Primary Completion Date

September 30, 2018

Study Completion Date

September 30, 2019

Conditions
Sickle Cell DiseaseAnemiaAnemia, HemolyticAnemia, Sickle CellHematologic Diseases
Interventions
OTHER

PROMIS for Pain Management App

At hospital discharge, the investigators will collect baseline surveys, a blood sample, and download the PROMIS for Pain Management App onto the subject's mobile device. For five consecutive weeks, PROMIS measures will be collected through weekly surveys. The investigators plan to compensate patients for their time. Patients will come back to the hospital after 35 days for a final blood draw and set of surveys. In the event a patient gets readmitted, the investigators will record that admission. The investigators will also collect Proxy PROMIS measures from parents of participants between the ages of 8 and 17-years who have agreed to participate in the study. It is the goal of the investigators to engage one of the parents in the reporting of weekly validated Proxy PROMIS measures.

Trial Locations (1)

20010

Children's National Hospital, Washington D.C.

All Listed Sponsors
collaborator

Arizona State University

OTHER

collaborator

Children's National Research Institute

OTHER

lead

Julia Finkel

OTHER