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Inherited Cancer Registry (ICARE): Contribute to Research While Staying Informed

https://www.facingourrisk.org/research-clinical-trials/study/195/inherited-cancer-registry-icare-contribute-to-research-while-staying-informed

Clinicaltrials.gov identifier:
NCT03231891 (https://clinicaltrials.gov/show/NCT03231891)


Registry for with an inherited mutation or cancer in the family

About the Study

NOTE: This study is no longer enrolling people. 

ICARE is a registry of individuals interested in participating in inherited cancer research, through which data and samples are collected to contribute to research. Participants are also provided with ongoing research and clinical updates and informed about other research opportunities for which they might be eligible. Participants are recruited across the United States and beyond. There is no cost to participate, and all materials can be completed online. 

What the Study Involves

Through ICARE, individuals interested in participating in studies focused on inherited cancer predisposition are recruited to a registry. Participants include individuals who carry a mutation (i.e., pathogenic or likely pathogenic variant) and/or variant of uncertain significance (VUS) in an inherited cancer gene, as well as patients with an unexplained strong personal and/or family history of cancer. There is no cost to participate, and all materials can be completed online.

Participation involves completing an online consent, medical records and tissue/tumor release forms, as well as an initial and follow-up surveys. Saliva and/or tumor samples may also be requested from participants to conduct additional genomic analyses.

Additionally, participants are sent information about targeted research efforts for which they may be eligible. For example, we currently have various research efforts underway, including:

  1. risks and treatment outcomes among individuals with multiple cancer types and a mutation in high (BRCA1, BRCA2, PALB2) and moderate risk (ATM, CHEK2, RAD51C, RAD51D) genes.
  2. breast cancers in women with BRCA1, BRCA2, PALB2, ATM, and CHEK2 mutations through doing tumor genomic testing, to learn more about how we might best treat them.

Lead Researcher

Tuya Pal, MD, FACMG
Principal Investigator
Vanderbilt University Medical Center
Vanderbilt-Ingram Cancer Center

This Study is Open To:

NOTE: This study is no longer enrolling people. 

This Study is Not Open To:

NOTE: This study is no longer enrolling people. 

About FORCE

FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.