title: Establishing a clinic-based pancreatic cancer and periampullary tumour research registry in Quebec.
abstract: BACKGROUND
  Enrolling patients in studies of pancreatic ductal adenocarcinoma (pdac) is challenging because of the high fatality of the disease. We hypothesized that a prospective clinic-based study with rapid ascertainment would result in high participation rates. Using that strategy, we established the Quebec Pancreas Cancer Study (qpcs) to investigate the genetics and causes of pdac and other periampullary tumours (pats) that are also rare and underrepresented in research studies.
  
  
  METHODS
  Patients diagnosed with pdac or pat were introduced to the study at their initial clinical encounter, with a strategy to enrol participants within 2 weeks of diagnosis. Patient self-referrals and referrals of unaffected individuals with an increased risk of pdac were also accepted. Family histories, epidemiologic and clinical data, and biospecimens were collected. Additional relatives were enrolled in families at increased genetic risk.
  
  
  RESULTS
  The first 346 completed referrals led to 306 probands being enrolled, including 190 probands affected with pdac, who represent the population focus of the qpcs. Participation rates were 88.4% for all referrals and 89.2% for pdac referrals. Family history, epidemiologic and clinical data, and biospecimens were ascertained from 91.9%, 54.6%, and 97.5% respectively of patients with pdac. Although demographics and trends in risk factors in our patients were consistent with published statistics for patients with pdac, the qpcs is enriched for families with French-Canadian ancestry (37.4%), a population with recurrent germ-line mutations in hereditary diseases.
  
  
  CONCLUSIONS
  Using rapid ascertainment, a pdac and pat research registry with high participation rates can be established. The qpcs is a valuable research resource and its enrichment with patients of French-Canadian ancestry provides a unique opportunity for studies of heredity in these diseases.
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC.
authors.forename: A L
authors.initials: AL
authors.lastname: Smith
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC.
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authors.lastname: Bascuñana
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC.
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authors.lastname: Hall
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
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authors.lastname: Salman
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC.
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authors.initials: AZ
authors.lastname: Andrei
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC. ; Program in Cancer Genetics, Department of Oncology and Human Genetics, McGill University, Montreal, QC.
authors.forename: A
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authors.lastname: Volenik
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC. ; Program in Cancer Genetics, Department of Oncology and Human Genetics, McGill University, Montreal, QC.
authors.forename: H
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authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
authors.forename: D
authors.initials: D
authors.lastname: Ferland
authors.affiliation: Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC. ; Hepato-Pancreato-Biliary Oncology, McGill University Health Centre, Montreal, QC.
authors.forename: D
authors.initials: D
authors.lastname: Lamoussenery
authors.affiliation: Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
authors.forename: A S
authors.initials: AS
authors.lastname: Kamath
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.initials: R
authors.lastname: Amre
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.lastname: Caglar
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.initials: ZH
authors.lastname: Gao
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.lastname: Haegert
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.lastname: Kanber
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.initials: RP
authors.lastname: Michel
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
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authors.affiliation: Hepato-Pancreato-Biliary Oncology, McGill University Health Centre, Montreal, QC.
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authors.lastname: Asselah
authors.affiliation: Hepato-Pancreato-Biliary Oncology, McGill University Health Centre, Montreal, QC.
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authors.lastname: Bouganim
authors.affiliation: Hepato-Pancreato-Biliary Oncology, McGill University Health Centre, Montreal, QC.
authors.forename: P
authors.initials: P
authors.lastname: Kavan
authors.affiliation: Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
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authors.affiliation: Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
authors.forename: J
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authors.lastname: Barkun
authors.affiliation: Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
authors.forename: P
authors.initials: P
authors.lastname: Chaudhury
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC.
authors.forename: S
authors.initials: S
authors.lastname: Gallinger
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; Program in Cancer Genetics, Department of Oncology and Human Genetics, McGill University, Montreal, QC.
authors.forename: W D
authors.initials: WD
authors.lastname: Foulkes
authors.affiliation: Department of Pathology, McGill University Health Centre, Montreal, QC.
authors.forename: A
authors.initials: A
authors.lastname: Omeroglu
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC.
authors.forename: P
authors.initials: P
authors.lastname: Metrakos
authors.affiliation: The Research Institute of the McGill University Health Centre, Montreal, QC. ; The Goodman Cancer Research Centre, McGill University, Montreal, QC. ; Hepato-Pancreato-Biliary and Transplant Surgery, McGill University Health Centre, Montreal, QC. ; Program in Cancer Genetics, Department of Oncology and Human Genetics, McGill University, Montreal, QC.
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keywords: Pancreatic cancer; cancer genetics; periampullary tumours; research registry; translational research