Kidney Cancer DNA Registry

NCT ID: NCT02087852

Last Updated: 2025-10-15

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

750 participants

Study Classification

OBSERVATIONAL

Study Start Date

2014-03-31

Study Completion Date

2026-03-31

Brief Summary

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This registry will help us develop better methods of:

* Preventing these cancers
* Diagnosing these cancers
* Treating these cancers

Detailed Description

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Conditions

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Renal Cancer

Study Design

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Observational Model Type

CASE_CONTROL

Study Time Perspective

PROSPECTIVE

Study Groups

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kidney cancer patients receiving care at MSKCC

Participation will consist of completing the Kidney Cancer Questionnaire Family History Questionnaire and complete the Epidemiologic Questionnaire (when applicable,), and providing a blood sample and saliva sample for germline DNA. In cases where tissue samples from surgically derived tumor specimens are obtained these will used to determine genetic alterations related to cancer predisposition or pathogenicity.

salvia for germline DNA

Intervention Type OTHER

the Kidney Cancer Questionnaire

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Family History Questionnaire (when applicable)

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Blood draw

Intervention Type OTHER

Epidemiologic Questionnaire

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

relatives of patients with kidney cancer

Participation will consist of completing the Kidney Cancer Questionnaire Family History Questionnaire (when applicable,), and providing a saliva sample for germline DNA. In cases where tissue samples from surgically derived tumor specimens are obtained these will used to determine genetic alterations related to cancer predisposition or pathogenicity.

salvia for germline DNA

Intervention Type OTHER

the Kidney Cancer Questionnaire

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Family History Questionnaire (when applicable)

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

healthy controls who are unrelated & do not have hx of cancer

Participation will consist of completing the Kidney Cancer Questionnaire Family History Questionnaire (when applicable,), and providing a saliva sample for germline DNA. In cases where tissue samples from surgically derived tumor specimens are obtained these will used to determine genetic alterations related to cancer predisposition or pathogenicity.

salvia for germline DNA

Intervention Type OTHER

the Kidney Cancer Questionnaire

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Family History Questionnaire (when applicable)

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

high risk

Participation will consist of completing the Epidemiologic Questionnaire, Family History Questionnaire (if + FH), provide saliva and blood sample , referral for screening evaluation

salvia for germline DNA

Intervention Type OTHER

Family History Questionnaire (when applicable)

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Blood draw

Intervention Type OTHER

Epidemiologic Questionnaire

Intervention Type BEHAVIORAL

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Interventions

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salvia for germline DNA

Intervention Type OTHER

the Kidney Cancer Questionnaire

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Intervention Type BEHAVIORAL

Family History Questionnaire (when applicable)

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Intervention Type BEHAVIORAL

Blood draw

Intervention Type OTHER

Epidemiologic Questionnaire

Patients will complete the appropriate surveys on either paper or on the computer/iPad in the office using REDCap software. If patients are unable to complete their questionnaires at the time of their in-office visit, a link to the questionnaires in REDCap will be emailed to them. The survey data that is collected in REDCap will be stored in REDCap. Clinic staff may also call patients to remind patients to complete questionnaires.

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

Kidney Cancer Case Cohort:

* Must be ≥ 18 years of age AND
* Must be an English-speaker AND
* Must have a diagnosis or suspicion of kidney cancer

Family Member Cohort:

* Must be ≥ 18 years of age AND
* Must be an English-speaker AND
* Must be a blood relative of the proband. Family members of probands including mother, father, sisters, brothers, half-sisters, half-brothers, daughters, sons, grandmothers, grandfathers, as well as aunts and uncles are eligible. These individuals need not have kidney cancer, as they will be used for segregation analysis of suspected variants found in the proband; requesting DNA from relatives is required.

Control Cohort:

* Must be ≥ 18 years of age AND
* Must be an English-speaker AND
* Must not have a personal history of cancer, with the exception of nonmelanoma skin cancer, AND
* Must not be a blood relative of any cases or controls enrolled in this study

Exclusion Criteria

* Patients who, in the opinion of the primary MSKCC clinician or the investigator, have a condition that precludes their ability to provide an informed consent
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Memorial Sloan Kettering Cancer Center

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Jonathan Jonathan, MD

Role: PRINCIPAL_INVESTIGATOR

Memorial Sloan Kettering Cancer Center

Locations

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Memorial Sloan Kettering at Basking Ridge (Consent and Follow-up)

Basking Ridge, New Jersey, United States

Site Status RECRUITING

Memorial Sloan Kettering Monmouth (Consent and Follow up)

Middletown, New Jersey, United States

Site Status RECRUITING

Memorial Sloan Kettering Bergen (Consent and Follow up )

Montvale, New Jersey, United States

Site Status RECRUITING

Memorial Sloan Kettering Commack (Consent and Follow-up)

Commack, New York, United States

Site Status RECRUITING

Memorial Sloan Kettering Westchester (Consent and Follow up)

Harrison, New York, United States

Site Status RECRUITING

Memorial Sloan Kettering Cancer Center (All Protocol Activities)

New York, New York, United States

Site Status RECRUITING

Memorial Sloan Kettering Nassau (Consent and Follow-Up)

Uniondale, New York, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Jonathan Coleman, MD

Role: CONTACT

646-422-4432

Kenneth Offit, MD

Role: CONTACT

646-888-4050

Facility Contacts

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Jonathan Coleman, MD

Role: primary

646-422-4432

Jonathan Coleman, MD

Role: primary

646-422-4432

Jonathan Coleman, MD

Role: primary

646-422-4432

Jonathan Coleman, MD

Role: primary

646-422-4432

Jonathan Coleman, MD

Role: primary

646-422-4432

Jonathan Coleman, MD

Role: primary

646-422-4432

Kenneth Offit, MD

Role: backup

646-888-4050

Jonathan Coleman, MD

Role: primary

646-422-4432

Related Links

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http://www.mskcc.org/

Memorial Sloan Kettering Cancer Center

Other Identifiers

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13-218

Identifier Type: -

Identifier Source: org_study_id

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