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5 March 2019 at 16h14 #2199Ved Prakash Singh BohraMember
We would like to thank you your interest to participate in the VALDIG´s study “Idiopathic noncirrhotic portal hypertension (IPH) outcome and prognosis factors”.
Although most of you already know the study we would like to review the 2 main objectives :
1) Objective 1: Describe the natural history of IPH and identify prognostic factors. Therefore, we need the information of all patients registered with IPH in your centers (only those centers with an active registry of idiopathic portal hypertension and that therefore can rule out a selection bias in the patients identified and included in the study).
2) Objective 2: To evaluate the long-term prognosis of patients with IPH who receive liver transplantation (and to be able to see recurrence, survival ..), only those transplant centers with a liver transplant registry will be able to participate. Again to ensure avoid “selection bias”. Transplant patients identified in Objective 1 may also be included as a result of the natural history of the disease.
The CRF of the study can be used to answer both objectives. You will see that we have simplified it with respect to an initial version that was very complex. We ask that when you have the CRFs you send them in order to include them in the database and monitor them.
It is also very important to have the number of patients you have registered in order to estimate the number of final patients that will be included.
Please find the easier, more “friendly” CRF, our ethical committee approval and an explanatory annex on the Valdig Website http://valdig.eu/idiopathic-noncirrhotic-portal-hypertension-iph-and-liver-transplantation-olt-outcome-and-prognosis-factors/
Please do not hesitate to contact us for any further clarification or doubts you may have.
Thank you very much for your participation!
Marta Magaz Martínez
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