CompletedNot Applicable

Engaging and Activating Cancer Survivors in Genetic Services Study

United States511 participantsStarted 2021-08-16

Plain-language summary

To address the gap in access to genetic services, this study will evaluate the effectiveness of an adapted model of remote delivery of genetic services to increase the uptake of recommended genetic assessment and testing in childhood cancer survivors.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Able to understand and communicate in English or Spanish * Currently residing in the US * Childhood Cancer Survivor Study Participant survivors of the following primary cancers: * CNS tumor * Sarcoma (except Ewing sarcoma) * Hepatoblastoma * Leukemia * Childhood Cancer Survivor Study Participant with a family history of a child with cancer: * 2 or more malignancies in childhood (age 18 or younger) * A first degree relative (parent or sibling) with cancer aged 45 or younger * 2 or more second degree relatives with cancer aged 45 or younger (same side of family) * Parents of the child with cancer are related (consanguinity) * Other family history that meets NCCN criteria * Able to communicate remotely through remote telegenetic platforms (phone or videoconference) with genetic counselors Exclusion Criteria: * Uncorrected or uncompensated speech defects that would lead to the participant being unable to communicate effectively with genetic counselor * Currently residing in a US state or territory where genetic counselors are not licensed to provide care * Uncontrolled psychiatric/mental condition or severe physical, neurological or cognitive deficits rendering individual unable to understand study goals and task * Participants who have already completed and received a clinically appropriate multi-gene panel genetic testing

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Number of Participants Who Received Genetic Services

Timeframe: Assessed at 6 Months for ARMS A/B/C

Genetic Knowledge Scale

Timeframe: Average time from baseline to disclosure was 152.3 days (standard deviation=150.0). (ARMS A/B only)

Impact of Events Scale (IES)

Timeframe: Average time from baseline to disclosure is 152.3 days, standard deviation = 150.0 days.(ARMS A/B only)

Patient-Reported Outcomes Measurement Information System (PROMIS)

Timeframe: Average time from baseline to disclosure is 152.3 days, standard deviation = 150.0 days.(ARMS A/B only)

Trial details

NCT IDNCT04455698

SponsorUniversity of Chicago

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2025-03-05

Results submitted2026-03-05

View on ClinicalTrials.gov More Cancer trials

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

Number of Participants Who Received Genetic Services

Timeframe: Assessed at 6 Months for ARMS A/B/C

Genetic Knowledge Scale

Timeframe: Average time from baseline to disclosure was 152.3 days (standard deviation=150.0). (ARMS A/B only)

Impact of Events Scale (IES)

Timeframe: Average time from baseline to disclosure is 152.3 days, standard deviation = 150.0 days.(ARMS A/B only)

Patient-Reported Outcomes Measurement Information System (PROMIS)

Timeframe: Average time from baseline to disclosure is 152.3 days, standard deviation = 150.0 days.(ARMS A/B only)