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)
Surveys, Registries, Interviews
People with an inherited mutation or cancer in the family
Study Contact Information:
Tuya Pal, MD, FACMG
Principal Investigator
Email: [email protected]
Phone: 615-875-2444
About the Study
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. To enroll into ICARE, please visit https://redcap.link/ICAREconsent.
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:
- A clinical trial to test online strategies to improve the delivery of follow-up care for those with inherited cancer gene mutations
- A study among individuals with PALB2, ATM, and CHEK2 mutations to evaluate breast cancer treatment and characteristics through conducting additional tumor genomic studies
- Additional tumor genomic studies in women with BRCA1 or BRCA2 mutations treated for breast cancer with Olaparib to evaluate whether this information could be used in the future to guide treatment
Lead Researcher
Tuya Pal, MD, FACMG
Principal Investigator
Vanderbilt University Medical Center
Vanderbilt-Ingram Cancer Center
This Study is Open To:
People who carry an inherited mutation in a gene linked to cancer, as well as patients with an unexplained strong personal and/or family history of cancer.
This Study is Not Open To:
People under the age of 18.
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.