Actively Recruiting
Outcomes of Health Care Transition for AYA With a Cancer Predisposition
Led by St. Jude Children's Research Hospital · Updated on 2026-04-23
56
Participants Needed
1
Research Sites
595 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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
Official Title
Outcomes of Health Care Transition for AYA With a Cancer Predisposition
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants are 18 years of age or older
- Participants have a molecular or clinical diagnosis of a Cancer Predisposition Syndrome (CPS) and are graduating or have graduated from SJCRH
- Participants were patients of the SJCRH Cancer Predisposition Clinic for at least 3 years before graduating
- Participants require cancer or tumor surveillance within 1 year after graduation from SJCRH according to expert guidelines
- Participants are fluent in English
You will not qualify if you...
- Participants who are not their own legal medical decision-maker
AI-Screening
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Trial Site Locations
Total: 1 location
1
St. Jude Children's Research Hospital
Memphis, Tennessee, United States, 38105
Actively Recruiting
Research Team
M
Melissa R Perrino, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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