YASU Research Registry: For Young Adults With Cancer

Breast Cancer Clinical Trial

Official title:

Young Adult Survivors United Cancer Research Registry

Clinical Trial Details — Status: Not yet recruiting

Administrative data

• NCT number: NCT06275854
• Other study ID #: 22265
• Status: Not yet recruiting
• Start date: May 1, 2024
• Est. completion date: May 1, 2030

Study information

• Verified date: February 2024
• Source: Young Adult Survivors United
• Contact: Bethany Nugent, PhD, RN
• Phone: 724-580-8292
• Email: research[@]yasurvivors.org
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial 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.

Recruitment information / eligibility

• Status: Not yet recruiting
• Enrollment: 5000
• Est. completion date: May 1, 2030
• Est. primary completion date: May 1, 2030
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

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

Locations

Country	Name	City	State
n/a

Sponsors (3)

Lead Sponsor	Collaborator
Young Adult Survivors United	Elsie H. Hillman Foundation, Staunton Farm Foundation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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
Primary	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
Primary	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
Primary	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
Primary	Needs Assessment	AYA Psycho-Oncology Screening Tool (AYA-POST) There is no scoring required for this tool.	enrollment in registry
Secondary	Name, address, email, phone number	Contact information if willing to be alerted about future research	enrollment in registry