Intervention For Adolescents and Young Adults (AYAs) With Cancer Risk Syndromes

Running, not enrolling · Not applicable

Conditions studied: Cancer Risk Syndrome

In brief

This research is being done because there is a need to improve cancer risk communication and decision-making among adolescents and young adults. In this study, the investigators are looking at whether using a chatbot and online portal for cancer risk information helps improve communication and decision-making. * Over 70,000 adolescents and young adults (AYAs) are diagnosed with cancer in the U.S. every year and up to 10% have genetic changes (or, mutations) that put them at a higher risk of developing new cancers during their lifetimes. These genetic mutations can result in cancer risk syndromes (such as, Lynch Syndrome or Li-Fraumeni Syndrome). Identifying cancer risk syndromes can allow for screening and early diagnosis of future cancers, which could ultimately save lives and offer more care choices for patients. As a result, genetic counseling and testing for cancer risk syndromes is being recommended more for Adolescents and Young Adults with new cancer diagnoses, regardless of family history. * This research study to develop an intervention called AYA-RISE that aims to assist AYAs with cancer risk communication and decision-making around their caregivers.

Key facts

Study ID

NCT04323774

Run by

Dana-Farber Cancer Institute

People needed

115

Starts

2021-03-01

Expected to finish

2027-06-30

Last updated by the study team

2026-07-29

Who can join

Age: 12 and older, up to 24. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Across all study aims, we will enroll AYA patients, family members/caregivers, and providers.
• AIM 1, PART 1 - STAKEHOLDER INTERVIEWS
• AYA Patients
• Ages 12-24 years, inclusive
• Diagnosed with a cancer risk syndrome
• English-speaking and -reading
• Receiving care at any of the study sites OR participating in the LiFraumeni Syndrome Association (LFSA) Youth Conference
• Adequate cognitive function per NeuroQOL indicated by a score of 30 or greater
• Not receiving active cancer therapy
• Family caregivers-Inclusion Criteria
• Parent/guardian, spouse/partner, or other family member who participates in the care of AYAs aged 12-24 with cancer risk syndromes
• English-speaking and -reading
• At any of the study sites
• Providers Inclusion Criteria (Oncologists, nurses, genetic counselors, social workers, or psychologists)
• English-speaking and reading
• Caring for AYAs aged 12-24 with cancer risk syndromes at any of the study sites
• AIM 1, PART 2 - INTERVENTION PILOT
• AYA Patients
• Ages 12-24 years, inclusive
• Diagnosed with a cancer risk syndrome
• English-speaking and -reading
• Receiving care at Dana-Farber Cancer Institute
• Adequate cognitive function per NeuroQOL, indicated by a score of 30 or greater
• Not receiving active cancer therapy
• Did not participate in a stakeholder interview

Where it is running

• Emory University School of Medicine — Atlanta, Georgia, United States
• University of Chicago — Chicago, Illinois, United States
• Boston Children's Hospital — Boston, Massachusetts, United States
• Dana Farber Cancer Institute — Boston, Massachusetts, United States
• University of Utah, Huntsman Cancer Institute — Salt Lake City, Utah, United States

Full record on ClinicalTrials.gov

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