Outcomes of Health Care Transition for AYA With a Cancer Predisposition

Part of paid clinical trials in Memphis, Tennessee.

Sponsor
St. Jude Children's Research Hospital
Study ID
NCT07456904
Status
Recruiting
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Conditions

  • Genetic Predisposition

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Readiness Assessment — BEHAVIORAL
    Electronic assessment administered 1 month post-graduation to evaluate transition preparedness.
  • Transition Outcomes Survey A — BEHAVIORAL
    Administered at 1 and 3 years post-graduation to assess health care engagement and psychosocial outcomes.
  • Transition Outcomes Survey B — BEHAVIORAL
    Administered at 5 and 8 years post-graduation to assess long-term outcomes and cancer surveillance adherence.

Study Details

This observational study evaluates whether adolescents and young adults (AYAs) with a cancer predisposition syndrome (CPS) establish and maintain adult health care and continue CPS-specific cancer surveillance after graduating from pediatric care at St. Jude Children's Research Hospital (SJCRH). Participants will complete a Readiness Assessment and periodic surveys over 8 years post-graduation. Primary Objectives * To evaluate whether adolescents and young adults (AYAs) with a cancer predisposition syndrome (CPS) report they have established care with adult health care providers and pursue CPS-specific cancer surveillance within 1-year post-graduation from SJCRH. * To evaluate whether AYAs with CPS report they maintain care with adult health care providers and continue CPS-specific cancer surveillance 3 years post-graduation from SJCRH. Exploratory Objectives: * To evaluate whether AYAs with CPS report they continue to maintain care with adult health care providers and complete CPS-specific cancer surveillance longitudinally 5 years and 8 years post-graduation from St. Jude Children's Research Hospital (SJCRH). * To examine clinical correlates of establishing care with adult providers and initiating CPS-specific cancer surveillance post-graduation from SJCRH. * To identify the tumors diagnosed in AYAs with CPS after they graduate from SJCRH and determine how these tumors were identified (i.e., through specific surveillance tests or based on symptoms). * To identify barriers and facilitators AYAs face when establishing and maintaining adult health care and pursuing CPS-specific cancer surveillance.

Key Dates

Start date
Jul 31, 2026
Status verified
Jun 2026
Primary completion
Nov 30, 2034
Completion
Nov 30, 2037

Study Design

Enrollment
56 participants (estimated)

Arms

  • Arm: Transition Cohort
    AYAs with CPS who have graduated from SJCRH and are followed longitudinally through surveys and assessments to evaluate health care transition outcomes.

Primary Outcome Measure

Establishment of Adult Health Care [ Time Frame: Evaluated 1 year after consent from the study. ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
St. Jude Children's Research HospitalMemphisTennessee38105
Melissa R Perrino, MD
[email protected]
888-226-4343

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By research site
St. Jude Children's Research Hospital· Memphis, TN

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