Establishing a clinic-based pancreatic cancer and periampullary tumour research registry in Quebec

  • A.L. Smith McGill University
  • C. Bascuñana McGill University
  • A. Hall McGill University
  • A. Salman McGill University
  • A.Z. Andrei McGill University
  • A. Volenik McGill University
  • H. Rothenmund McGill University
  • D. Ferland McGill University
  • D. Lamoussenery McGill University
  • A.S. Kamath McGill University
  • R. Amre McGill University
  • D. Caglar McGill University
  • Z.H. Gao McGill University
  • D.G. Haegert McGill University
  • Y. Kanber McGill University
  • R.P. Michel McGill University
  • G. Omeroglu-Altinel McGill University
  • J. Asselah McGill University
  • N. Bouganim McGill University
  • P. Kavan McGill University
  • G. Arena McGill University
  • J. Barkun McGill University
  • P. Chaudhury McGill University
  • S. Gallinger McGill University
  • W.D. Foulkes McGill University
  • A. Omeruglu McGill University
  • P. Metrakos McGill University
  • G. Zogopoulos McGill University
Keywords: pancreatic cancer, periampullary tumours, research registry, cancer genetics, translational research



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.


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.


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 germline mutations in hereditary diseases.


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.

How to Cite
Smith, A., Bascuñana, C., Hall, A., Salman, A., Andrei, A., Volenik, A., Rothenmund, H., Ferland, D., Lamoussenery, D., Kamath, A., Amre, R., Caglar, D., Gao, Z., Haegert, D., Kanber, Y., Michel, R., Omeroglu-Altinel, G., Asselah, J., Bouganim, N., Kavan, P., Arena, G., Barkun, J., Chaudhury, P., Gallinger, S., Foulkes, W., Omeruglu, A., Metrakos, P., & Zogopoulos, G. (2015). Establishing a clinic-based pancreatic cancer and periampullary tumour research registry in Quebec. Current Oncology, 22(2), 113-121.
Translational Research