Origins of CAPER.
1. The Midwest Multicenter Pancreatic Study Group (MMPSG).
CAPER began in 1994 as the Midwest Multicenter Pancreatic Study Group (MMPSG). The Midwest Multicenter Pancreatic Study Group (MMPSG) was formed in 1994 in order to facilitate large, prospective, randomized, controlled, multicenter trials that should impact positively on the clinical management of patients with these disorders. Initial members included David C. Whitcomb, M.D., Ph.D. at the University of Pittsburgh, Charles D. Ulrich II, MD and Stephen P. Martin, MD at the University of Cincinnati, and Lawrence K. Gates, MD at the University of Kentucky. This collaboration developed due to their common interest in clinical and basic pancreatic research, the close proximity of their institutions, and the relationships that had developed at Duke University, the Mayo Clinic, and the University of Pittsburgh.
The MMPSG established early by-laws and defined criteria for membership and participation in protocols. Membership was individual, not institutional. Each member was allowed to act as Principal Investigator of one active protocol, and was encouraged to participate as a co-Investigator in other protocols. Participation in each protocol was voluntary. Issues were discussed and resolved via conference calls involving all members participating in said protocol. A Coordinating Director (elected annually) facilitates communication through distribution of protocols, organization of conference calls and biannual meetings, and conduction of elections. An Executive Committee (elected annually) reviewed progress on each protocol and the contributions of each individual member to each protocol and the group as a whole. Continued membership was dependent on active participation and productivity. The MMPSG meet annually during July to review the findings of the Executive Committee, vote on applications for membership, and discuss other relevant issues.
2. Successes of the MMPSG
a. Scientific Advances. The initial success of the MMPSG was seen with the hereditary pancreatitis study led by Dr Whitcomb. The multi-center study recruited patients from a large family in Kentucky and West Virginia for a genetic linkage study. The study resulted in the discovery that mutations in the cationic trypsinogen gent (PRSS1) result in hereditary pancreatitis, and pointed to the central role of trypsin in acute pancreatitis and the link between acute and chronic pancreatitis (Whitcomb et al, Nature Genetics1996;14(2):141-5). In collaboration with Dr Lowenfels hereditary pancreatitis was also linked with pancreatic cancer. Since then, the group has published dozens of important papers related to pancreatic diseases, and continues to publish. More importantly, it has become the basis of the NAPS2 programs (), which continue to make major contributions through ongoing studies.
b. Educational Advances. A major success of the MMPSG was the development of the International Symposium on Inherited Diseases of the Pancreas series (see below). This program, supported by unrestricted educational grants from Solvay Pharmaceuticals, has made major impacts on educating the medical and scientific community on advances in the genetics of pancreatic diseases.
In 2002 Dr Whitcomb organized the Pancreas Thought Leaders Conference, which included members of the MMPSG to discuss the problem of bringing new physicians and researchers into the field of pancreas research. The meeting was supported by Solvay harmaceutical and included representatives from Europe who had help develop “Pancreas2000” the brain-child of Johan Permert MD (a pancreas surgeon in the Department of Surgery, Karolinska Institute ). The program was held near Pittsburgh, PA, between August 4 and 7, 2002 and resulted in a series of recommendations for a training program for fellows. Since the MMPSG and the University of Pittsburgh unable to meet the criteria for financial support of a program supported by Solvay as recommended, the grant was channeled through the National Pancreas Foundation, and became the NPF Fellows Symposium (see - Pancreas. 2010 Apr;39(3):415-7.). The MMPSG (i.e. CAPER) continue to work closely with the NPF to develop trainees interested in the pancreas.
c. Reorganization and establishment of CAPER. By 2004 Dr Whitcomb was the only original member of the MMPSG that was still doing pancreas research in an academic setting. Furthermore, the primary multicenter study of the group was the NIDDK funded North American Pancreatitis Study 2 (NAPS2), with annual investigators meetings linked to national meetings, and the annual summer meeting becoming informal. To address this issue Dr Whitcomb developed the PancreasFest program, linking several meetings to the same venue in July, and called for the development of a new organization called the North American Pancreatic Study Group (NAPSG) – see link. Dr Whitcomb also recommended that the NAPSG become a formal (501C) non-profit organization in order to better manage issues of finances, accountability and leadership. The new leaders were concerned that the name NAPSG missed the major commitment to the education and development of young investigators, and came up with the new name – CAPER. The annual meeting is linked to PancreasFest (see ), which Dr Whitcomb continues to host during the last Thursday-Saturday of July each year in Pittsburgh, PA.
3. The MMPSG and International Symposia.
1st International Symposium. In March of 1997, the Midwest Multi-Center Pancreatic Study Group, the University of Pittsburgh and the American Digestive Health Foundation co-sponsored the 1st International Symposium on Hereditary Pancreatitis in Pittsburgh, Pennsylvania with financial support of Solvay Pharmaceuticals (now Abbott Pharmaceuticals). This meeting marked a new era in studies on inherited predisposition to pancreatic disease in adults, and inspired further studies by a number of groups.
2nd International Symposium. The rapid expansion of information in hereditary pancreatitis, the diversity of pancreatic pathophysiology resulting from mutations in CFTR, and advances in the genetics of pancreatic cancer provided the foundation for the 2nd International Symposium on Inherited Diseases of the Pancreas held in Cincinnati, Ohio in March of 1999 with financial support of Solvay Pharmaceuticals (now Abbott Pharmaceuticals). Over 100 participants from three continents discussed the rapid evolution of our understanding of these disease states. The proceedings of this meeting were the basis of the following book.
1 Inherited Diseases of the Pancreas. Ed. Whitcomb DC, Cohn JA and Ulrich II CD, Medical Clinics of North America, Volume 84, Number 3 (May, 2000). WB Saunders Company, Philadelphia, PA. 248 pages.
3rd International Symposium. Advances in technological advances, new genetic findings and concerns about privacy and genetic testing lead to the 3rd International Symposium on Inherited Diseases of the Pancreas in Milan Italy in April 2001. This meeting was being co-sponsored by the MMPSG, the European Institute of Oncology and the University of Cincinnati Office of Continuing Medical Education, with major financial support from Solvay Pharmaceuticals. An awards banquet will honored Henry T. Lynch, MD for his pioneering contributions to the field of hereditary pancreatic cancer. The proceedings were the basis of the following book:
• The Genetics Basis of Pancreatic Disorders, Edited by Durie P, Lerch MM, Lowenfels AB, Maisonneuve P, Ulrich II CD, and Whitcomb DC, Published by Karger, Basil Switzerland, 2002
4th International Symposium. The 4th International symposium on Inherited Diseases of the Pancreas was held in Chicago IL in conjunction with the American Pancreatic Association, the University of Pittsburgh and the MMPSG with financial support of Solvay Pharmaceuticals (now Abbott Pharmaceuticals). Advances in understanding the role of CFTR and new discoveries of the cause of Shwachman-Diamond syndrome were highlighted. The proceedings were the basis of the following book:
• Pancreatic Diseases: Novel Mechanisms and Management. Ed. Whitcomb DC, Brand R, and Lerch M. Gastroenterology Clinics of North America, Volume 33, Number 4 (Dec, 2004). WB Saunders Company, Philadelphia, PA.
5th International Symposium. The 5th International symposium on Inherited Diseases of the Pancreas was held in Graz, Austria. The program was a 2 day satellite symposium of the European Pancreas Club and co-sponsored by the MMPSG with financial support of Solvay Pharmaceuticals (now Abbott Pharmaceuticals). Again, the proceedings were published in a book:
1 Molecular basis of inherited pancreatic disorders. Guest Ed. Lerch MM, Griesbacher T, Whitcomb DC. Endocrinol Metab Clin North Am. Volume 35 Number
(June 2006). WB Saunders Company, Philadelphia, PA
6th International Symposium. The 6th International symposium on Inherited Diseases of the Pancreas is held in Pittsburgh, PA in July 2010. The program is integrated into PancreasFest 2010, and focuses on advances in PRSS1, SPINK1 and CFTR research.
(see program at www.pancreasfest.org).
The history of the MMPSG continues with the development of CAPER. The greatest accomplishment of the MMPSG was to develop a new community of physicians and scientists, and a new culture of collaboration and encouragement. The advancement of the informal MMPSG to the non-profit organization CAPER (through the very generous legal professional support of Cordy Glenn and Thomas Birsic and the hard work of the new officers) is highly significant because it will allow many of the major needs of the academic and scientific community to be met in professional, legal and ethical ways. Through the MMPSG, CAPER has the foundation, history, experience, direction and mandates which are critical to moving the medical field of pancreas forward.
David C Whitcomb MD PhD April 2010