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Registries

Patient registries are valuable in helping research studies collect data. Therefore, patients can help advance the clinical understanding of genes and their association with disease by enrolling in any of the relevant registries below. This list is not comprehensive, and there may be registries that are appropriate which are not listed. None of the registries listed on this webpage are affiliated with Myriad®. They are listed here for informational purposes only. If you have any questions regarding privacy of your data before enrolling in a registry, please reach out to the registry.

If you have a registry that you would like listed on this webpage, or if you see a registry listed that is no longer active, please complete the form below to let us know. To have a registry added, the criteria that needs to be met include:

  1. An active and direct link to registry
  2. Clearly outlined description of purpose of research and goals
  3. Enrollment information and details of involvement of participant (i.e. blood, questionnaires, clinic visit)
  4. Email, phone or other mechanism to contact registry with questions

View Registries by Cancer

Multi-Gene/Cancer Registries

Registry name Institution Website or email address
Prospective Registry of Multiplex Testing (PROMPT) Multiple http://www.promptstudy.info
Hereditary Cancer Center High Risk Registry Creighton University http://medschool.creighton.edu/preventivemedicine/
ICARE – Inherited Cancer Registry Vanderbilt University Medical Center https://inheritedcancer.net/

Breast Cancer Registries

Registry name Institution Website or email address
Prospective Registry of Multiplex Testing (PROMPT) Multiple http://www.promptstudy.info
Hereditary Cancer Center High Risk Registry Creighton University http://medschool.creighton.edu/preventivemedicine/
ICARE – Inherited Cancer Registry Vanderbilt University Medical Center https://inheritedcancer.net/

Ovarian Cancer Registries

Registry name Institution Website or email address
Oregon Ovarian Cancer Registry Oregon Health and Science University http://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/ovarian-cancer-registry.cfm

Colorectal Cancer Registries

Registry name Institution Website or email address
The David G. Jagelman Inherited Colorectal Cancer Registry Cleveland Clinic https://my.clevelandclinic.org/departments/digestive/depts/hereditary-colorectal-neoplasia
The Familial Colorectal Cancer Registry MSKCC Memorial Sloan Kettering Cancer Center https://www.mskcc.org/cancer-care/types/colon/clinical-trials/hereditary-registry
Hereditary Gastrointestinal Cancer Registry/Huntsman Colon Cancer Institute University of Utah Huntsman Cancer Institute http://healthcare.utah.edu/huntsmancancerinstitute/patient-care/clinics-and-care-teams/high-risk-cancer-research-clinics-and-studies/hereditary-gastrointestinal-cancer-registry/
UCSF Gastrointestinal Hereditary Cancer Registry University of California San Francisco http://gi.ucsf.edu/care/services/cancer.html
Sandra Rosenberg Registry for Hereditary and Familial Colon Cancer Rush University Medical Center https://www.rush.edu/services/sandra-rosenberg-registry-hereditary-and-familial-colon-cancer
Familial Gastrointestinal Cancer Registry Mount Sinai Hospital http://www.zanecohencentre.com/gi-cancers/fgicr
Vanderbilt Hereditary Colorectal Cancer Registry Vanderbilt http://www.vicc.org/hcp/registry/
Oregon Colorectal Cancer Registry Oregon Health and Science University https://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/colon-cancer/registries/index.cfm?DCSext.condition
Inherited Colorectal Cancer and Polyposis Registry Washington University, St Louis http://www.colorectalregistry.wustl.edu/
Alive and Kickin’ – Lynch Syndrome Registry Alive and Kickin’ https://aliveandkickn.org/lynch-syndrome

Endometrial Cancer Registries

Registries to be added soon

Melanoma Cancer Registries

Registry name Institution Website or email address
War On Melanoma – Melanoma Community Registry Oregon Health and Science University www.WarOnMelanoma.com

Pancreatic Cancer Registries

Registry name Institution Website or email address
Oregon Pancreas Tumor Registry Oregon Health and Science University http://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/pancreatic-tumor-registry.cfm
Pancreatic Cancer Genes Study (PAGES) Dana-Farber Cancer Institute http://www.dana-farber.org/uploadedFiles/Library/adult-care/treatment-and-support/centers-and-programs/cancer-genetics-and-prevention/pages.pdf
Indiana Familial Pancreatic Cancer Roster Indiana University http://www.familialcancer.iupui.edu/page04.htm
Gastrointestinal Genetic Epidemiology Mayo Clinic http://www.mayo.edu/research/labs/gastrointestinal-genetic-epidemiology/pancreatic-cancer-genetic-epidemiology
Hereditary Gastrointestinal Cancer Registry/Huntsman Colon Cancer Institute University of Utah Huntsman Cancer Institute http://healthcare.utah.edu/huntsmancancerinstitute/patient-care/clinics-and-care-teams/high-risk-cancer-research-clinics-and-studies/hereditary-gastrointestinal-cancer-registry/
The National Familial Pancreas Tumor Registry Johns Hopkins Hospital http://pathology.jhu.edu/pancreas/nfptr/index.php
Jefferson Pancreas Tumor Registry (JPTR) Thomas Jefferson University http://hospitals.jefferson.edu/departments-and-services/pancreas-biliary-and-related-cancer-center/registry/
MSKCC Pancreatic Tumor Registry Memorial Sloan-Kettering Cancer Center https://www.mskcc.org/departments/epidemiology-biostatistics/epidemiology/pancreatic-family-registry

Gastric Cancer Registries

Registry name Institution Website or email address
Early Onset and Familial Gastric Cancer Registry Memorial Sloan-Kettering Cancer Center https://www.mskcc.org/cancer-care/clinical-trials/05-118

Prostate Cancer Registries

Registries to be added soon