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Improving self-reported data collection for young cancer patients

Improving Adolescent and Young Adult Self-Reported Data in ECOG-ACRIN Trials

Not applicable Interventional Eastern Cooperative Oncology Group · NCT05108298

This study is testing whether young cancer patients prefer choosing their own health topics to report on or using a set list, to see which method helps them share their experiences better and feel more satisfied with the process.

Quick facts

PhaseNot applicable
Study typeInterventional
Enrollment400 (estimated)
Ages18 Years to 39 Years
SexAll
SponsorEastern Cooperative Oncology Group Research network
Drugs / interventionschemotherapy, radiation
Locations347 sites (Fairbanks, Alaska and 346 other locations)
Trial IDNCT05108298 on ClinicalTrials.gov

What this trial studies

This pilot randomized controlled trial aims to evaluate the feasibility and acceptability of completing patient-reported outcomes (PROs) among adolescents and young adults (AYAs) with cancer. Participants will be randomized to either select their own health-related quality of life (HRQOL) domains or follow a fixed set of domains during assessments over a year. The study will assess completion rates and participant satisfaction with the PRO process, utilizing adherence boosters like reminder calls and texts to enhance data collection. Additionally, the study will explore AYAs' preferences for sharing their PRO data with healthcare providers and family members.

Who should consider this trial

Good fit: Ideal candidates are young adults aged 18 to 39 with a recent diagnosis of primary cancer who are able to complete questionnaires in English.

Not a fit: Patients with recurrent or second primary cancers may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could enhance the accuracy and relevance of self-reported health data from young cancer patients, leading to better-tailored treatments.

How similar studies have performed: While this approach is innovative, similar studies have shown promise in improving patient engagement and data collection in oncology settings.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

Patient must be ≥ 18 years and ≤ 39 years of age at registration. Patient must have a histologically confirmed diagnosis of primary cancer of any stage within 12 weeks (84 days) at registration.

Patient must have received, be currently receiving or planning to receive treatment for cancer, including surgery and/or chemotherapy and/or radiation therapy.

Patient must have an ECOG performance status 0-3. Patient must have a life expectancy \>24 months. Patient must be able to complete questionnaires in English. Patient must have internet access through computer, tablet, or smartphone. Patient must have an email address. Patient must have a mobile phone able with text messaging capabilities. Patient must be able to accurately provide self-report data (e.g. per clinical judgment, cognitive function is intact).

Patient must be able to provide informed consent.

Exclusion Criteria:

Patient must not have a recurrence or second primary cancer. Patients must not have basal cell skin carcinoma.

Where this trial is running

Fairbanks, Alaska and 346 other locations

+297 more sites — see ClinicalTrials.gov for the full list.

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Breast Cancer, NOSCNS Primary Tumor, NOSCervical Cancer, NOSColorectal Cancer, NOSLeukemia, NOSLymphoma, NOSMiscellaneous Neoplasm, NOSNon-Rhabdomyosarcoma Soft Tissue Sarcoma, NOS
Last reviewed 2026-06-09 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.