NCT04323774Fut, nem toboroz
Intervention For Adolescents and Young Adults (AYAs) With Cancer Risk Syndromes
AYA-RISE: Refining a Scalable, Patient- and Family-centered Intervention to Improve Cancer Risk Communication and Decision-making Among Adolescents and Young Adults With Cancer Risk Syndromes
Forrás: ClinicalTrials.gov · Utoljára frissítve: 2026. júl. 29.
Rövid összefoglaló (regiszter, angolul)
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.
- Állapot (regiszter)
- Fut, nem toboroz
- Vizsgálattípus
- Beavatkozással járó
- Résztvevők száma
- 115 (tényleges)
- Első benyújtás
- 2020. márc. 23.
- Kezdés
- 2021. márc. 1.
- Elsődleges befejezés
- 2025. júl. 11.
- Fő szponzor
- Dana-Farber Cancer Institute
- Betegségek
- Gyermekkori daganatok
- NCT-szám
- NCT04323774
Mit vállalsz
- Vizsgálat típusa: Beavatkozással járó
- Bevont résztvevők: 115
- 2021. márc. 1. és az elsődleges befejezés (2025. júl. 11.) között
- 5 helyszín, 1 országban
- Vizitek és vizsgálatok: kérdezd a vizsgálat csapatát, a regiszter nem sorolja fel őket
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Kiket keres a vizsgálat
- 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
- Eligibility notes:
- Family caregivers of participating 12-17y patients will be eligible to participate in the pilot
- 12-17y patients can participate without a family member if both the patient and family member agree.
- Patients 18-24y will have the option to participate with or without a family member.
- AIM 2 - RANDOMIZED TRIAL
- AYA Patients
- Ages 12-24 years, inclusive
- Diagnosed with a cancer risk syndrome
- English-speaking and reading
- Has a planned post-disclosure genetic counseling or follow-up visit at any of the study sites
- Adequate cognitive function per NeuroQOL, indicated by a score of 30 or greater
- Not receiving active cancer therapy
- Did not participate in either part of Aim 1 (interview or pilot)
- Family caregivers
- 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
- Did not participate in either part of Aim 1 (interview or pilot)
- AIM 3 - SEMI-STRUCTURED INTERVIEWS AYA Patients, Family Caregivers, Providers, and Site PIs
- Participated in the intervention arm of Aim 2, or
- Is a site principal investigator at one of the 4 participating study sites
Életkor a regiszterben: 12 év – 24 év · Nem: nők és férfiak · Egészséges önkénteseket is fogad
Helyszínek (5)
Helyszínek a regiszter sorrendjében. Ha a profilodba mented a városodat, távolság szerint rendeződnek.
| Helyszín | Város | Ország | Helyszín állapota |
|---|---|---|---|
| Emory University School of Medicine | Atlanta | Egyesült Államok | Ismeretlen állapot |
| Dana-Farber Cancer Institute | Boston | Egyesült Államok | Ismeretlen állapot |
| Boston Children's Hospital | Boston | Egyesült Államok | Ismeretlen állapot |
| University of Chicago | Chicago | Egyesült Államok | Ismeretlen állapot |
| University of Utah - Huntsman Cancer Institute | Salt Lake City | Egyesült Államok | Ismeretlen állapot |
Kapcsolódó publikációk
- Chatbot Intervention and Cancer Risk Knowledge in Adolescents and Young Adults With Cancer Predisposition: A Randomized Clinical Trial.JAMA Netw Open · 2026 · PMID 42842248
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