YASU Research Registry: for Young Adults with Cancer

• Conditions: Leukemia; Sarcoma; Cancer; Melanoma; Breast Cancer; Germ Cell Cancer; Lymphoma; Colorectal Cancer

• Registration Number: NCT06275854
• Lead Sponsor: Young Adult Survivors United

Brief Summary

The goal of this observational research registry is to learn about health, wellbeing, and needs of survivors of young adult cancer (diagnosed between the ages of 18 and 39). The main question\[s\] it aims to understand are:

* What are the levels of depression, anxiety, social support, and financial distress

* Determine effectiveness of YASU programming by measuring changes over time

With this registry, the investigators also plan to identify survivors who may be eligible for participation in future research studies pertaining to young adult cancer.

Participants will be asked to complete electronic surveys every 6 to 12 months during participation in the registry.

Detailed Description

The study will be conducted online.

Study Timeline

• Study First Submitted: 2024-01-22
• Study First Submitted QC: 2024-02-22
• Study First Posted: 2024-02-23
• Status Verified: 2025-02
• Study Start: 2025-02-03
• Last Update Submitted: 2025-02-07
• Last Update Posted: 2025-02-11
• Primary Completion: 2030-05-01
• Study Completion: 2030-05-01

Recruitment & Eligibility

• Status: ENROLLING_BY_INVITATION
• Sex: All
• Target Recruitment: 5000

Inclusion Criteria

1. Cancer diagnosis received between the ages of 18 and 39.
2. Able to speak and read English

Exclusion Criteria

1. Inability to provide consent (such as neurological illness or mental incapacity)
2. Has not registered as a member of YASU

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Anxiety	enrollment in registry, 6 months later, yearly until death	General Anxiety Disorder-7 (GAD-7). Scores range from 0-21 with higher scores indicating higher levels of anxiety.
Financial Toxicity	enrollment in registry, 6 months later, yearly until death	COST: A FACIT Measure of Financial Toxicity (COST - FACIT (Ver 2)) Scores range from 0-44. The higher the score, the better the Financial Well-Being
Needs Assessment	enrollment in registry	AYA Psycho-Oncology Screening Tool (AYA-POST) There is no scoring required for this tool.
Depressive symptoms	enrollment in registry, 6 months later, yearly until death	Patient Health Questionnaire- 9 (PHQ-9) Scores range from 0-27, with higher scores indicating more depressive symptoms.
Social Support	enrollment in registry, 6 months later, yearly until death	MOS Social Support Survey Instrument The survey consists of four separate social support subscales and an overall functional social support index. A higher score for an individual scale or for the overall support index indicates more support.; MOS Social Support Survey Instrument; Measure of Social Support Survey Instrument

Secondary Outcome Measures

Name	Time	Method
Name, address, email, phone number	enrollment in registry	Contact information if willing to be alerted about future research

Trial Locations

Locations (1)

Young Adult Survivors United; 🇺🇸 Wexford, Pennsylvania, United States