Cancer patients' family talks about genetic surprises studied
NCT ID NCT02713334
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study explores how cancer patients feel and what they do when they learn about extra genetic findings from their tumor tests. Researchers want to understand how patients decide to share this information with their family members. About 495 adults with solid tumors are taking part. The goal is to learn, not to treat or cure.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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495 people
The number who actually took part.
- Start date
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Feb 2016
- Expected to finish
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Feb 2027
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
300 participants for the proposed study from those already enrolled in protocol #12-245, and who agree to receive their secondary findings through Consent Part C of this existing protocol.
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: Patients (Phase I): * 18 years of age or older * Has consented to MSK IRB protocol #12-245, Consent A and Part C * Has not received secondary findings as a result of MSK IRB protocol #12-245, Consent Part C as per EMR and/or patient report * Diagnosed with a solid tumor as per EMR and/or clinician judgment * English-fluent; the surveys were designed and validated in English and are not currently available in other languages. Translation of questionnaires into other languages would require reestablishing the reliability and validity of these measures. Therefore, participants must be able to communicate in English to complete the surveys. Family members (Phase I): * 18 years of age or older as per self report * Nominated by the patient participant as a family member with whom the secondary findings have been shared (spouses/partners are eligible as "family members" for the purposes of this study) * English-fluent; the surveys were designed and validated in English and are not currently available in other languages. Translation of questionnaires into other languages would require reestablishing the reliability and validity of these measures. Therefore, participants must be able to communicate in English to complete the surveys. Patients (Phase 2): * 18 years of age of older * Has consented to MSK IRB protocol #12-245, Consent Part A and C * English-fluent; the surveys were designed and validated in English and are not currently available in other languages. Translation of questionnaires into other languages would require reestablishing the reliability and validity of these measures. Therefor, participants must be able to communicate in English to complete the surveys. AYA Survivors of Pediatric Cancers (Phase 3): * Age 15 to 30 years old * Are at least 1 year post-treatment for pediatric cancer (i.e., any cancer diagnosed before age 18) * Has consented or provided assent to MSK IRB protocol #12-245, Consent Part A and C * Has received pathogenic secondary findings as a result of MSK IRB protocol #12- 245, Consent Part C as per EMR and/or CGS care provider report * Participated in a CGS consultation following receipt of secondary findings * English-fluent; the surveys were designed and validated in English and are not currently available in other languages. Translation of questionnaires into other languages would require reestablishing the reliability and validity of these measures. Therefore, participants must be able to communicate in English to complete the surveys. Adult Caregivers of Survivors of Pediatric Cancers (Phase 3): * 18 years of age or older * Are the caregiver of a child who was treated for pediatric cancer (i.e., any cancer diagnosed before age 18). Caregiver status is based on either: 1) nomination as such by a young adult survivor (i.e., age 18+), 2) having consented on behalf of a minor child (i.e., age \<18) to MSK IRB protocol #12-245 Part A and C plus self-reported confirmation that s/he is the caregiver for the child, or 3) nomination by the adult who consented on behalf of a minor child (i.e., age \<18) to MSK IRB protocol #12-245 Part A and C plus self-reported confirmation that s/he is the caregiver for the child * That child is currently alive and at least 1 year post-treatment for pediatric cancer (i.e., any cancer diagnosed before age 18) * Has consented on behalf of that child, or that child consented, to MSK IRB protocol #12-245, Consent Part A and C * That child received pathogenic secondary findings as a result of MSK IRB protocol #12-245, Consent Part C as per EMR and/or CGS healthcare provider report * Participated in a CGS consultation following receipt of secondary findings * English-fluent; the surveys were designed and validated in English and are not currently available in other languages. Translation of questionnaires into other languages would require reestablishing the reliability and validity of these measures. Therefore, participants must be able to communicate in English to complete the surveys Exclusion Criteria: * Received genetic testing in the past that resulted in a pathogenic finding or a variant of unknown significance as reported in the EMR. * Major psychiatric illness or cognitive impairment that in the judgment of the investigator or study staff would preclude study participation * Any patients who are unable to comply with the study procedures as determined by the study investigators or study staff.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Memorial Sloan Kettering Cancer Center
New York, New York, 10065, United States
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Other studies related to the condition(s) this trial covers.
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