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Program Helps Teens and Young Adults With Sickle Cell Disease Manage Their Care

Tests a group program and app for teens and young adults with sickle cell disease.

Key facts

Who runs it
Children's Hospital Medical Center, Cincinnati
Where
Atlanta, Cincinnati, Philadelphia, and Wilmington, United StatesSee the 4 sites
Trial code
Registry title
A Socio-ecological Approach for Improving Self-management in Adolescents With SCD
Status
Recruiting
People taking part
310 people, planned
Started
3 Feb 2025
Expected to end
30 Jun 2028
Type of study
Interventional, 2 groupsOne group gets an existing treatment, for comparison.
Treatments tested
  • SCThrive
  • SCHealthED
Record updated
11 May 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for teenagers and young adults with sickle cell disease who get care at a taking-part sickle cell clinic. It tests an 8-week virtual group programme with a mobile app.

Age
13 to 21 years
Sex
All sexes can join.
Disease stage
Confirmed sickle cell disease (SCD).

Main reasons for not taking part

  • Another chronic disease
  • Does not speak English
  • A cognitive or psychiatric disorder that the doctor or study therapists think would make taking part hard

The registry criteria, word for word

Show all 6 criteriaShow less

Who can take part

  • Patient of a participating SCD Clinic
  • Confirmed diagnosis of SCD
  • 13-21 years of age

Who cannot take part

  • Another chronic disease (which would complicate measurement of patient activation)
  • Cognitive or psychiatric disorder that the physician or study therapists believe would impair study participation
  • Non-English-speaking

Check if you might fit

Answer for yourself. This is not a decision: only the study team can say whether you can take part.

  • Are you between 13 and 21 years old?

Where in United States

  • Children's Healthcare of AtlantaAtlanta, United StatesContact: Vontarius HowardNot yet recruiting
  • Cincinnati Children's Hospital Medical CenterCincinnati, United StatesContact: Lori Crosby, PsyDTaking people
  • Children's Hospital of PhiladelphiaPhiladelphia, United StatesContact: Polina PoliakovaNot yet recruiting
  • Nemours Children's HealthWilmington, United StatesContact: Benjamin Bear, MSWNot yet recruiting

About the trial

What the trial wants to find out

The goal of this clinical trial is to evaluate the impact of SCThrive (a behavioral self-management intervention) on patient activation, self-management behaviors, daily functioning, and emergency room visits in 260 adolescents and young adults with sickle cell disease (SCD) ages 13-21 receiving care at 1 of 4 pediatric SCD clinics.

Read full original descriptionShow less

The main question[s]it aims to answer are:

* Does SCThrive improve patient activation? * Does SCThrive improve self-management behaviors, daily functioning, and decrease emergency room visits? * Are any improvements maintained 3 months after treatment?

Participants will complete self-management related surveys before, after, and 3 months following their participation in an 8- week, virtual group intervention with an accompanying mobile app (SCThrive).

Researchers will compare outcomes for participants who receive SCThrive and participants who receive uniform standard care (SCHealthED which = standard of care plus SCD educational text messages) to see if there are differences in patient activation, self-management behaviors, daily functioning, and emergency room visits.

The 2 groups in the trial

  • Active TreatmentExisting treatment, for comparison

    SCThrive is a virtual, 8-week, virtual group-based, behavioral self-management intervention that includes daily use of a companion mobile app.

    Treatment: SCThrive

  • Control ConditionPlacebo, for comparison

    Participants randomized to SCHealthED will receive usual care plus 7 text messages consisting of SCD educational facts to ensure the care is uniform across sites.

    Treatment: SCHealthED

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
A Socio-ecological Approach for Improving Self-management in Adolescents With SCD
Plain-language title
Program Helps Teens and Young Adults With Sickle Cell Disease Manage Their CareGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Fit questions
Built from NCT06290401, who can take part
Record updated
11 May 2026