The International Association of Pancreatology (IAP) is entering a new era.
IAP is now preparing to initiate, promote and support intercontinental studies on pancreatic diseases and would like to offer members the possibilities to submit a study protocol to the Scientific Subcommittee of IAP Council. If accepted by IAP council, the IAP will send your protocol to all IAP members to invite participation and patient recruitment. The aim of this process is to increase the possibilities for patient recruitment to large international studies.
The first protocol that has been accepted by IAP council is devoted to the natural history of serous cystadenomas. The Council has chosen a simple protocol as the first project. It involves only two ‘visits’ (one retrospective corresponding to the SC diagnosis, one corresponding to the last visit or surgery or death). ALL patients seen in your institution with a SC diagnosis posterior to 01/01/1990 have to be included.
The European Pancreatic Club has also agreed to endorse this study.
Those who want to participate are invited to send a mail to the following address: IAPserouscystadenoma@gmail.com.
To include patients, you can fill either the form online by clicking on the link located on the front page of blog http://iapserouscystadenoma.wordpress.com/ (password: serouscystadenoma). You can also answer the form through the attached CRF. Filled CRFs have to be sent as an attached file at the following address: IAPserouscystadenoma@gmail.com
Goals :
1. Multicentre international registry of several hundreds of cases
2. To definitively describe the natural history of serous cystadenomas (SC) in terms of
1. Symptoms or complications due to SC during F/U
1. Pancreatitis
2. Cholestatis
3. Pancreatic insufficiency
4. Portal hypertension
5. Intracystic hemorrhage
6. Malignancy
7. Disease related mortality
8. Surgery related mortality
2. To describe the growth rate
Expected number enrolled in the registry
> 1000
Awaited results SC burden in terms of complication rate, related mortality, likelihood of malignant transformation
Clarification of surgical indications
Authorship rules and data access
For the princeps study, first and last authors will be from Beaujon team. IAP and other scientific societies who might accept to participate per se will be listed at the end.
For centres including between 20 and 100 cases, two authors will be added (at best: one junior collecting the data and one mentor). If requested, a supplementary author might added for each supplementary hundreds of cases (e.g.: > 100 cases = 3 authors, >200 cases = 4 authors and so on). Authors will be listed in accordance to decreasing number of inclusion.
Other contributors (less than 20 cases) will be acknowledged at the end of the manuscript.
Once the core paper will be accepted for publication, entire data will be accessible on simple demand.
Pr. Philippe Lévy
President of the International Association of Pancreatology
Service de Pancréatologie-Gastroentérologie
Pôle des Maladies de l’Appareil Digestif
Université Denis Diderot-Paris VII
Hôpital Beaujon, APHP
92118 Clichy Cedex, France