Find a Registry

 

CGA is pleased to offer members access to a vast list of global registries.
The list below provides you with quick access to Registries throughout the US, Canada and South America.

Need assistance in contacting a registry?

For information on starting a registry, please contact CGA at

cga@pacemedcom.com

If you are interested in more information on starting a hereditary colorectal cancer registry, a manual is available online to members.

(password required)

Registry Manual Available for Download Soon

Argentina

Caba

Programa de Cáncer Hereditario del Hospital Italiano de BsAs (Pro.Can.He)

Principal Investigator: Walter Pavicic

Coordinator Name: Fabiana Alejandra Ferro

Registry Phone: +54 11 4959 0200

Registry Email Address: procanhe@hospitalitaliano.org.ar

Registry Website: https://www1.hospitalitaliano.org.ar/#!/home/procanhe/seccion/9841

Recruitment Status: Active, Open to patients who present for at least one visit, Participation can be done remotely
Consortium: 
Prospective Lynch Syndrome Database (PLSD)

Pediatric Patients: No

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3)

Data Collection Software: Microsoft Access

Cordoba

Hospital Privado (HP)
Principal Investigator: Claudia Martin
Coordinator Name: Claudia Martin
Registry Phone: +54 35 1559 0424

Registry Email Address: claudia.martin81@gmail.com

Registry Website: www.hospitalprivado.com.ar

Recruitment Status: Closed, Limited to patients seen at the participating institution
Consortium: 
EORC-LATAM

Pediatric Patients: Yes

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), Peutz-Jeghers Syndrome (including STK11), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1)

Data Collection Software: Excel

 

Brazil

Sao Paulo

Registro de Câncer Hereditário do Hospital Beneficência Portuguesa de São Paulo (RCHBP)
Principal Investigator: Benedito Mauro Rossi

Coordinator Name: Erika Maria Monteiro Santos

Registry Phone: +55 11 3705 6735

Registry Email Address: oncogenetica@bp.org.br

Registry Website: https://www.bp.org.br/centros-de-especialidades/oncologia

Recruitment Status: Active, Open to patients who present for at least one visit

Consortium: Colorectal Cancer in Latin America

Pediatric Patients: No

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer, 

Data Collection Software: Progeny and RedCap

 

Canada

Ontario

Familial GI Cancer Registry/Zane Cohen Centre for Digestive Diseases (FGICR)
Principal Investigator: Zane Cohen

Coordinator Name: Melyssa Aronson

Registry Phone: +1 (416) 586-4800 ext. 3154

Registry Email Address: melyssa.aronson@sinaihealth.ca

Registry Website: https://www.zanecohencentre.com/fgicr

Recruitment Status: Active, Participation can be done remotely
Consortium: 
Pancreatic Cancer Genetic Epidemiology Consortium (PACGENE), Pancreatic Cancer Case-Control (PANC4) Consortium, International Mismatch Repair Consortium (IMRC), Colon Cancer Family Registry (CCFR or Colon CFR), Prospective Lynch Syndrome Database (PLSD)

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer

Data Collection Software: Microsoft Access

 

International

Genetics of Colonic Polyposis (GCPS)

Principal Investigator: Daniel Buchanan

Coordinator Name: Sharelle Joseland

Registry Phone: +61 385 597 004

Registry Email Address: daniel.buchanan@unimelb.edu.au

Registry Website: http://www.buchananlab.org/

Recruitment Status: Active, Participation can be done remotely

Consortium: Colon Cancer Family Registry (CCFR or Colon CFR)

Pediatric Patients: No

Data Collection Software: Microsoft Access

Colon Cancer Family Registry Cohort (CCFR)
Principal Investigator: Mark A. Jenkins

Coordinator Name: Allyson Templeton

Registry Phone: +1 (206)667-6313

Registry Email Address: atemplet@fredhutch.org

Registry Website: www.coloncfr.org

Recruitment Status: Closed, Participation can be done remotely
Consortium: Colon Cancer Family Registry (CCFR or Colon CFR)

Pediatric Patients: No

Data Collection Software: Site-Specific


Bowel Cancer Surveillance Service
Principal Investigator: Finlay A Macrae

Coordinator Name: Finlay A Macrae

Registry Phone: +61 3 8559 7232

Registry Email Address: finlay.macrae@mh.org.au

Recruitment Status: Active, Participation can be done remotely
Consortium: International Mismatch Repair Consortium (IMRC), Colon Cancer Family Registry (CCFR or Colon CFR), Prospective Lynch Syndrome Database (PLSD)

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Lower/moderate colorectal cancer risk genes

USA

California

Hereditary GI Cancer Prevention Registry
Principal Investigator: Aparajita Singh

Coordinator Name: Laurel Hochstetler

Registry Phone: +1 (415) 885-7481

Registry Email Address: laurel.hochstetler@ucsf.edu

Registry Website: https://kintalk.org

Recruitment Status: Active, Participation can be done remotely

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer, Lower/moderate colorectal cancer risk genes

Data Collection Software: Progeny, FIlemaker Database

Connecticut

Smilow Cancer Genetics and Prevention Program Research Repository
Principal Investigator: Xavier Llor

Coordinator Name: Xavier Llor

Registry Phone: +1 (203) 200-4362

Registry Email Address: xavier.llor@yale.edu
Recruitment Status: Active, Open to patients who present for at least one visit

Consortium: International Cancer of the Pancreas Screening (CAPS) Consortium

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer, Lower/moderate colorectal cancer risk genes

Data Collection Software: Progeny

 

Illinois

Sandra Rosenberg Registry for Hereditary and Familial Colon Cancer
Principal Investigator: Joshua Melson, MD

Coordinator Name: Sandra Valdez

Registry Phone: (312)942-5861

Registry Email Address: joshua_melson@rush.edu

Registry Website: https://www.rush.edu/locations/high-risk-gi-cancer-clinic

Recruitment Status: Active, Limited to patients seen at the participating institution, Open to patients who present for at least one visit

Consortium: Prospective Lynch Syndrome Database (PLSD)

Pediatric Patients: No

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Familial/Hereditary Pancreatic Cancer

Data Collection Software: Redcap

Missouri

Washington University Inherited Colorectal Cancer and Familial Polyposis Registry (WashU ICCFPR)
Principal Investigator: Paul E. Wise
Registry Phone: (314)454-7177
Registry Website: 
https://siteman.wustl.edu/treatment/cancer-types/colorectal/inherited-colorectal-cancer-and-familial-polyposis-registry/

Recruitment Status: On Hold, Open to patients who present for at least one visit

Consortium: International Mismatch Repair Consortium (IMRC), Prospective Lynch Syndrome Database (PLSD)

Pediatric Patients: Yes

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), 

Data Collection Software: Excel

New York

Clinical Hereditary GI Cancers Registry

Principal Investigator: Francesca Tubito

Coordinator Name: Francesca Tubito

Registry Phone: +1 (877) 902-2232

Registry Email Address: FRT2004@med.cornell.edu

Registry Website: https://www.nyp.org/cadc/support-wellness/clinical-hereditary-gi-cancers-registry

Recruitment Status: Active, Open to patients who present for at least one visit

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer, Lower/moderate colorectal cancer risk genes

Adherence to Comprehensive Multi-Organ Screening Recommendations in Patients with Lynch Syndrome
Principal Investigator: Zsofia K. Stadler

Coordinator Name: Zsofia K. Stadler

Registry Phone: +1 (646) 888-4039 
Recruitment Status: Active, Participation can be done remotely

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM)

Data Collection Software: Excel, Progeny

Ohio

Hereditary Polyposis Clinic at Nationwide Children's 
Principal Investigator: Steve Erdman

Coordinator Name: Steve Erdman

Registry Phone: +1 01 61 4722 3411

Registry Email Address: steven.erdman@nationwidechildrens.org

Registry Website: https://www.nationwidechildrens.org/specialties/polyposis-services

Recruitment Status: Active, Participation can be done remotely
Consortium: 
International Mismatch Repair Consortium (IMRC), Colon Cancer Family Registry (CCFR or Colon CFR)

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1)

The Ohio State University Population-Based Colorectal Cancer Cohorts (OSU CRC Cohorts)
Principal Investigator: Heather Hampel

Coordinator Name: Heather Hampel
Registry Phone: +1(614) 293-7240

Registry Email Address: Heather.Hampel@osumc.edu

Registry Website: https://cancer.osu.edu/for-patients-and-caregivers/learn-about-cancers-and-treatments/innovation-at-the-james/genetic-counseling

Recruitment Status: Closed, Limited to patients seen at the participating institution
Consortium: 
International Mismatch Repair Consortium (IMRC), Genetics and Epidemiology of Colorectal Cancer Consortium (GECCO)

Pediatric Patients: No

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer

Data Collection Software: RedCa

Pennsylvania

Hereditary Colorectal and Associated Tumor Study

Principal Investigator: Randall Brand

Coordinator Name: Randall Brand
Registry Phone: +1 (412) 623-3105

Registry Email Address: brandre@upmc.edu
Recruitment Status: Active, Limited to patients seen at the participating institution
Consortium:

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Lower/moderate colorectal cancer genes

Data Collection Software: Open Specimen

 

The Pancreatic Adenocarcinoma Gene Environment Risk Study (PAGER)

Principal Investigator: Randall Brand

Coordinator Name: Randall Brand
Registry Phone: +1 (412) 623-3105
Registry Email Address:
 brandre@upmc.edu
Registry Website: https://clinicaltrials.gov/ct2/show/NCT00912717

Recruitment Status: Active, Limited to patients seen at the participating institution
Consortium: 
International Cancer of the Pancreas Screening (CAPS) Consortium, The Cancer of the Pancreas Screening-5 Study (CAPS5),  Pancreatic Cancer Early Detection Consortium (PRECEDE)

Hereditary Cancer Syndromes Included: Familial/Hereditary Pancreatic Cancer

Data Collection Software: Open Specimen

Tennessee

Inherited Cancer Registry (ICARE)
Principal Investigator: Tuya Pal

Coordinator Name: Anne Weidner

Registry Phone: (615)875-2444

Registry Email Address: ICARE@inheritedcancer.net

Registry Website: https://inheritedcancer.net/

Recruitment Status: Active, Participation can be done remotely

Pediatric Patients: No

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Attenuated Familial Adenomatous Polyposis (APC), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1)

Data Collection Software: RedCap

Utah

Hereditary Gastrointestinal Cancer Registry (HGCR)
Principal Investigator: Deb Neklason

Coordinator Name: Megan Keener
Registry Phone: +1(801) 585-6439

Registry Email Address: registry.coordinator@hci.utah.edu

Registry Website: https://healthcare.utah.edu/huntsmancancerinstitute/screening-prevention/hereditary-gastrointestinal-cancers-registry.php

Recruitment Status: Active, Participation can be done remotely
Consortium: 
International Mismatch Repair Consortium (IMRC)

Pediatric Patients: Yes

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM), Constitutional Mismatch Repair Deficiency (MLH1, MSH2, MSH6, PMS2 & EPCAM), Other Non-Polyposis Families (FCCTX, Amsterdam II), Familial Adenomatous Polyposis (APC), Attenuated Familial Adenomatous Polyposis (APC), MUTYH-Associated Polyposis (MUTYH), Polymerase Proofreading-Associated Polyposis (POLE & POLD1), Peutz-Jeghers Syndrome (including STK11), Juvenile Polyposis Syndrome (including BMPR1A & SMAD4), PTEN Tumor Hamartoma Syndrome (PTEN), Hyperplastic Polyposis/Serrated Polyposis (including RNF43), Other Polyposis Syndromes (Mixed, GREM1, NTHL1, MSH3), Hereditary Diffuse Gastric Cancer (including CDH1 & CTNNA1), Familial/Hereditary Pancreatic Cancer, Lower/moderate colorectal cancer risk genes

Data Collection Software: Internal Database

Patient-Lead

The HEROIC Registry

Principal Investigator: Robin Dubin
Coordinator Name: Robin Dubin
Registry Phone: +1 (201) 694-8282

Registry Email Address: robin@aliveandkickn.org

Registry Website: https://www.aliveandkickn.org/the-heroic-patient-registry

Recruitment Status: Active, Participation can be done remotely
Consortium: LunaDNA Platform

Pediatric Patients: No

Hereditary Cancer Syndromes Included: Lynch Syndrome (MLH1, MSH2, MSH6, PMS2 & EPCAM)

Data Collection Software: LunaDNA Platform