| Open collaborative Studies |
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| Monday, 09 May 2011 12:36 |
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CAPP III ready to be launched (J. Burn) John Burn has announced in San Antonio the dose-finding study CAPP III. Preliminary thoughts envisage an international recruitment of 10.000 (!) LS patients as a worldwide effort. The paper submitted to Lancet has been revised according to the reviewers suggestions and can be found in the protected area of this site. We are all excited to hear more about the status and timing of CAPP III during our upcoming meeting.
PJS Syndrome and Guidelines (S. Hodgson) Shirley Hodgson is still happy to receive information on more PJS patients. This is intended as a prospective ongoing collaboration in order to refine our recommendations eventually with higher numbers and more evaluated clinical information. Click here to open PJS Formular. Mallorca Polyposis (G. Möslein) In Paris the suggestion was made to collect patients with multiple polyps in the longitudinal vies. The group reached unanimous agreement to collect patients fulfilling the following criteria:
During the upcoming meeting it will be suggested to generate an algorithm as to a recommendation for genetic diagnosis of the underlying cause. The collection will then compile these results in order to evaluate this recommendation. IRA and mesenteric desmoids (suggested by Hans Vasen, open to debate)
To collect data on patients with an IRA and an intraabdominal desmoid tumor. It would be interesting to investigate if there are problems in such patients if they need a proctectomy and reconstruction to an IPAA. This was discussed by Church at the San Antonio meeting who thought that our recommendation (guidelines 2008) to consider an IPAA in patients at high risk for desmoid development was not based on scientific evidence. Juvenile Polyposis (suggested by Hans Vasen, open to debate) Who feels like collecting and defining management guidelines?
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