YASU Research Registry: For Young Adults With Cancer

NCT06275854 | Terminated

• 1 other identifier: 22265
• Study Type: observational
• Target: 192
• Locations: 1 country
• Sites: 1

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.

Conditions

Cancer; Leukemia; Sarcoma; Germ Cell Cancer; Lymphoma; Colorectal Cancer; Melanoma; Breast Cancer

Keywords

young adult cancer

Outcome Measures

Primary Outcomes (5)

• Anxiety

  General Anxiety Disorder-7 (GAD-7). Scores range from 0-21 with higher scores indicating higher levels of anxiety.

  enrollment in registry, 6 months later, yearly until death

• Depressive symptoms

  Patient Health Questionnaire- 9 (PHQ-9) Scores range from 0-27, with higher scores indicating more depressive symptoms.

  enrollment in registry, 6 months later, yearly until death

• Social Support

  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

  enrollment in registry, 6 months later, yearly until death

• Financial Toxicity

  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

  enrollment in registry, 6 months later, yearly until death

• Needs Assessment

  AYA Psycho-Oncology Screening Tool (AYA-POST) There is no scoring required for this tool.

  enrollment in registry

Secondary Outcomes (1)

• Name, address, email, phone number

  enrollment in registry

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

Any young adult diagnosed with cancer between the ages of 18 and 39 willing to register on the YASU website and consents to participation in the research registry.

You may qualify if:

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

You may not qualify if:

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

Sponsors & Collaborators

• Young Adult Survivors United: lead
• Staunton Farm Foundation: collaborator
• Elsie H. Hillman Foundation: collaborator

Study Sites (1)

Young Adult Survivors United

Wexford, Pennsylvania, 15090, United States

Location

MeSH Terms

Conditions

Neoplasms; Leukemia; Sarcoma; Neoplasms, Germ Cell and Embryonal; Lymphoma; Colorectal Neoplasms; Melanoma; Breast Neoplasms

Condition Hierarchy (Ancestors)

Neoplasms by Histologic Type; Hematologic Diseases; Hemic and Lymphatic Diseases; Neoplasms, Connective and Soft Tissue; Lymphoproliferative Disorders; Lymphatic Diseases; Immunoproliferative Disorders; Immune System Diseases; Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Neoplasms by Site; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; Rectal Diseases; Neuroendocrine Tumors; Neuroectodermal Tumors; Neoplasms, Nerve Tissue; Nevi and Melanomas; Skin Neoplasms; Skin Diseases; Skin and Connective Tissue Diseases; Breast Diseases

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 10 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 22, 2024
• First Posted: February 23, 2024
• Study Start: February 3, 2025
• Primary Completion: September 30, 2025
• Study Completion: September 30, 2025
• Last Updated: October 14, 2025

Record last verified: 2025-10

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL, SAP
• Time Frame: Starting once enrollment has been open for 6 months.
• Access Criteria: In order to be granted access to our dataset, the outside researcher would need to secure IRB approval for their proposed study and then would sign a YASU-provided confidentiality agreement. Datasets shared with researchers outside of YASU will not include identifiers. Future research collaborators outside of YASU may use the registry to contact participants for other studies and may have access to screen for candidates. Outside researchers who wish to use contacts from the YASU research registry in recruitment for their study will be required to secure IRB approval for their proposed study and to complete the YASU-provided confidentiality agreement prior to any possible participant contact information being shared. Once IRB-approval has been received and the agreement is completed, the PI (and/or YASU executive director) may grant the requestor access to the requested information.

Locations

US (1)