Community Health Workers and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care

Study point of contact

Caren M Steinway, MPH MSW
516-838-6421
[email protected]
Tanisha D Belton, MPH
215-590-4673
[email protected]

Locations

5 United States sites

Age

> 17 Years

Genotypes

HbSS, HbSC, HbSβ0Thal

Phase

N/A

Study type

Interventional

Gender

All

Interventions

Other

Compensation

Unknown

About the study

This study will compare the effectiveness of two self-management support
interventions-Community Health Workers (CHW) and mobile health (mHealth)-versus enhanced
usual care to improve health-related quality of life and acute care use for transitioning
youth with sickle cell disease (SCD), and identify and quantify mediators and moderators of
intervention treatment effects.

participation requirements

– Males or females age 17 years or older

– Have sickle cell disease, defined as those individuals with HbSS, HbSC, HbSβ0Thal,
HbSβ+Thal genotypes

– Receive care at a participating pediatric sickle cell disease center.

– Appropriate for transfer to an adult hematologist within 12 months

participation restrictions

– Individuals with an intellectual disability that is severe enough that the individual
would not have the capacity to interact with a mobile or web-based program even with
assistance or have a conversation with a community health worker (i.e. non-verbal).

Locations

  • Hartford, Connecticut, United States, Connecticut Children's Medical Center, 06106 [Recruiting]
  • New Hyde Park, New York, United States, Cohen's Children's Medical Center, 11040 [Recruiting]
  • Cincinnati, Ohio, United States, Cincinnati Children's Hospital Medical Center, 45229 [Recruiting]
  • Philadelphia, Pennsylvania, United States, Children's Hospital of Philadelphia, 19104 [Recruiting]
  • Philadelphia, Pennsylvania, United States, St. Christophers Hospital for Children, 19134 [Recruiting]
Last updated 2021-07-02 Enroll Now