Recruiting

Cancer SurveillanceOutcomes of Health Care Transition for AYA With a Cancer Predisposition

Sponsor:

St. Jude Children's Research Hospital

Code:

NCT07456904

Conditions

Genetic Predisposition

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Interventions

Readiness Assessment

Transition Outcomes Survey A

Transition Outcomes Survey B

Study Details

Brief summary:

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.

Conditions

Genetic Predisposition

Study ID

NCT07456904

Start date

Jun 16, 2026

Status verified date

Jun, 2026

Completion date

Nov, 2037

Anticipated

Primary completion date

Nov, 2034

Anticipated

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Inclusion Criteria:

Participants are ≥18 years of age
Participants with a molecular or clinical diagnosis of a Cancer Predisposition Syndrome (CPS) who are graduating or have graduated from SJCRH.
Participants who were a patient of the SJCRH Cancer Predisposition Clinic for at least 3 years before graduating from SJCRH
Participants who require cancer/tumor surveillance within 1 year after graduation from SJCRH. Required cancer/tumor surveillance in adulthood is defined as having a CPS with expert guidelines recommending cancer/tumor surveillance in adulthood
Participants fluent in English.

Exclusion Criteria:

Participants who are not their own legal medical decision-maker.

Study Design

Enrollment

56 participants

Anticipated

Interventions and Outcome Measures

Arms

Transition Cohort

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

Interventions

Readiness Assessment

Electronic assessment administered 1 month post-graduation to evaluate transition preparedness.

Transition Outcomes Survey A

Administered at 1 and 3 years post-graduation to assess health care engagement and psychosocial outcomes.

Transition Outcomes Survey B

Administered at 5 and 8 years post-graduation to assess long-term outcomes and cancer surveillance adherence.

Primary outcome measure

Establishment of Adult Health Care [ Time Frame: Evaluated 1 year after consent from the study. ]
Maintenance of Adult Health Care [ Time Frame: Evaluated 3 years after consent from the study. ]

Central Contacts and Locations

Central contacts

Melissa R Perrino, MD

888-226-4343 referralinfo@stjude.org

Locations

St. Jude Children's Research Hospital

Recruiting

Memphis, Tennessee, United States, 38105

Contacts

Melissa R Perrino, MD

888-226-4343 referralinfo@stjude.org

More Information

Sponsor

St. Jude Children's Research Hospital

Last update posted

Jun 18, 2026

Last verified

Jun, 2026

Keywords

Genetic cancer risk
Cancer predisposition
Health care transition
Adolescent and young adult oncology

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by St. Jude Children's Research Hospital on 2026-06-18.