YASU Research Registry: For Young Adults With Cancer

October 8, 2025 updated by: Young Adult Survivors United

Young Adult Survivors United Cancer Research Registry

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.

Study Overview

Status

Terminated

Conditions

Detailed Description

The study will be conducted online.

Study Type

Observational

Enrollment (Actual)

192

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

United States
- Pennsylvania
  - Wexford, Pennsylvania, United States, 15090
    - Young Adult Survivors United

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

Adult
Older Adult

Accepts Healthy Volunteers

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.

Description

Inclusion Criteria:

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

Exclusion Criteria:

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Anxiety Time Frame: 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.	enrollment in registry, 6 months later, yearly until death
Depressive symptoms Time Frame: 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.	enrollment in registry, 6 months later, yearly until death
Social Support Time Frame: 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	enrollment in registry, 6 months later, yearly until death
Financial Toxicity Time Frame: 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	enrollment in registry, 6 months later, yearly until death
Needs Assessment Time Frame: enrollment in registry	AYA Psycho-Oncology Screening Tool (AYA-POST) There is no scoring required for this tool.	enrollment in registry

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Name, address, email, phone number Time Frame: enrollment in registry	Contact information if willing to be alerted about future research	enrollment in registry

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Young Adult Survivors United

Collaborators

Staunton Farm Foundation

Elsie H. Hillman Foundation

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

February 3, 2025

Primary Completion (Actual)

September 30, 2025

Study Completion (Actual)

September 30, 2025

Study Registration Dates

First Submitted

January 22, 2024

First Submitted That Met QC Criteria

February 22, 2024

First Posted (Actual)

February 23, 2024

Study Record Updates

Last Update Posted (Estimated)

October 14, 2025

Last Update Submitted That Met QC Criteria

October 8, 2025

Last Verified

October 1, 2025

More Information

Terms related to this study

Keywords

young adult cancer

Additional Relevant MeSH Terms

Other Study ID Numbers

22265 (City of Hope Medical Center)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

YES

IPD Sharing Time Frame

Starting once enrollment has been open for 6 months.

IPD Sharing 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.

IPD Sharing Supporting Information Type

STUDY_PROTOCOL
SAP

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

Studies a U.S. FDA-regulated device product

product manufactured in and exported from the U.S.

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.