STUDY COORDINATOR
Mrs. Marie O' Donnell
Department of Clinical Genetics
Alder Hey Children's Hospital
Easton Road
Liverpool L12 2AP
Great Britain

Tel.: +44 (151) 252-5905
Fax: +44 (151) 252-5905

 

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EUROPAC
The European Registry Of Hereditary Pancreatitis And Familial Pancreatic Cancer


CALL FOR PATIENTS WITH FAMILIAL PANCREATIC DISEASE

 

We have established a European register (EUROPAC) of families with hereditary pancreatitis, familial pancreatic cancer and where pancreatic cancer has occurred as part of a familial cancer syndrome. This collaboration in Liverpool is between the Department of Clinical Genetics (Dr. Ian Ellis) and the Academic Department of Surgery (Prof. John Neoptolemos). The data and samples are collected on behalf of ESPAC (The European Study Group for Pancreatic Cancer), Professor Markus Büchler, Berne, and Professor Hans Beger, Ulm. The study is in collaboration with Dr. David Whitcomb of the Midwest Multicenter Pancreatitis study group in the United States. We are recruiting families who are prepared to donate blood samples for DNA studies. We hope to gain a clearer understanding of the genetic relationship between hereditary pancreatitis and familial pancreatic cancer, and develop screening protocols for at risk individuals.

Hereditary pancreatitis is associated with a mutation in the cationic trypsinogen gene. The risk of developing pancreatic cancer is greatly increased in families with hereditary pancreatitis or certain familial cancer syndromes. Familial pancreatic cancer may also occur independently of either of these, with an apparently dominant mode of inheritance, but the genetics of this is at present poorly understood. There is some evidence that DNA analysis of cells from pancreatic fluid may be valuable in detecting pre-malignant changes that can predict the development of pancreatic adenocarcinoma.

The criteria for inclusion in the study are as follows:

Hereditary pancreatitis.
Two close relatives with chronic pancreatitis in the absence of ethanol dependence, hypercalcaemia, or obstructive disease.

Familial pancreatic cancer.
Two first degree relatives with pancreatic ductal adenocarcinoma.
Three or more relatives with pancreatic ductal adenocarcinoma.
Pancreatic ductal adenocarcinoma in any two relatives where the sum of their ages is less than 110 years.

Other familial cancer syndromes.
A single documented pancreatic ductal adenocarcinoma in any family with an established familial cancer syndrome, for example BRCA2, FAMMM, A-T, HNPCC, or FAP.

If you know of any suitable families who may be interested in joining the study, please contact Mrs. Marie O' Donnell at the above address. Thank you for your help.

 

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