Dear All,
Following the presentation at the last ENEA meeting at Lyon, MAAPY study, supported by ENEA, continues!
Germline mutations in the aryl hydrocarbon receptor interacting protein (AIP) gene can be found in patients bearing Pit-NET, in sporadic context or in familial context (Familial Isolated pituitary adenoma (FIPA). The presence of AIP mutation in sporadic cases highlights the incomplete and highly variable penetrance of the disease.
The aim of MAAPY study is to clarify
- 1- the risk for the asymptomatic mutation carriers to develop Pit-Net
- 2- the follow up needed for these asymptomatic mutation carriers
Patients included in the MAAPY study are all relatives, bearing familial AIP mutation and considered as asymptomatic before genetic screening.
If you want to participate to the MAAPY study: please send an email to Dr Pauline Romanet pauline.romanet@ap-hm.fr. You will receive a link and a code for the MAAPY website to include the data by your centre. Pease find the methodological synthesis, the information notice for patient and the notice to enter the data in the MAAPY websitehttps://amubox.univ-amu.fr/s/JBLoeaGotr3Hggj.
Thank you very much in advance for your participation In the ENEA MAAPY study Best wishes
Pr Anne Barlier Dr Pauline Romanet
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