Outcomes of Health Care Transition for AYA With a Cancer Predisposition

NCT07456904 | Recruiting

• 1 other identifier: OnTRAC
• Study Type: observational
• Target: 56
• Locations: 1 country
• Sites: 1

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

Keywords

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

Outcome Measures

Primary Outcomes (2)

• Establishment of Adult Health Care

  Proportion of Young Adults with Cancer Predisposition Syndromes Who Have an Identified Adult Medical Provider Managing Cancer Surveillance One Year Post-Pediatric Care Transition

  Evaluated 1 year after consent from the study.

• Maintenance of Adult Health Care

  Proportion of Young Adults with Cancer Predisposition Syndromes Who Maintain an Identified Adult Medical Provider for Cancer Surveillance Three Years Post-Pediatric Care Transition

  Evaluated 3 years after consent from the study.

Study Arms (1)

Transition Cohort

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

Behavioral: Readiness Assessment; Behavioral: Transition Outcomes Survey A; Behavioral: Transition Outcomes Survey B

Interventions

Readiness Assessment BEHAVIORAL

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

Transition Cohort

Transition Outcomes Survey A BEHAVIORAL

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

Transition Cohort

Transition Outcomes Survey B BEHAVIORAL

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

Transition Cohort

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

All participants who meet eligibility criteria and consent to enrollment on the study

You may qualify if:

• 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.

You may not qualify if:

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

Sponsors & Collaborators

• St. Jude Children's Research Hospital: lead

Study Sites (1)

St. Jude Children's Research Hospital

Memphis, Tennessee, 38105, United States

RECRUITING

Related Links

• St. Jude Children's Research Hospital
• Clinical Trials Open at St. Jude

MeSH Terms

Conditions

Genetic Predisposition to Disease

Condition Hierarchy (Ancestors)

Disease Susceptibility; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Melissa R Perrino, MD

  St. Jude Children's Research Hospital

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Melissa R Perrino, MD

CONTACT

888-226-4343; referralinfo@stjude.org

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 3, 2026
• First Posted: March 9, 2026
• Study Start (Estimated): July 1, 2026
• Primary Completion (Estimated): November 1, 2034
• Study Completion (Estimated): November 1, 2037
• Last Updated: June 4, 2026

Record last verified: 2026-06

Locations

US (1)