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Incontinentia Pigmenti France - maladie rare

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Studies and projects under progress Print E-mail
dimanche, 13 mai 2007
  • Study ‘ Expression of Incontinentia Pigmenti in adults’:  this study is part of a PHRC ( hospital project of clinical research)  and has concerned 25 adults ewamined at Necker Hospital, Paris. The results of this study will be known after the scientific article written as a conclusion is accepted (  first semester, 2007)
  • Setting up of a work team at Necker Sick Children Hospital to sudy the various forms of epilepsy in children with IP. The team wishes first to collect documents on the exams prescribed to children with IP ( IRM, EEG). This should lead eventually  to the elaboration of a specific treatment of epilepsy for children with IP. 
  • February 2008: Christine Bodomer set up a team of clinical work on IP (neurology, radiology, ophthalmology, stomatology and dermatology). They aim at a precise assessment of the patients and their medical documents (history, evolution,treatment) in  close contact with the medical teams in charge of the patients so far. Their goal is clinical research and no quick  repercussions in terms of new treatment can be expected. However the study could lead to a new  medical approach, especially concerning convulsions
  • If you wish to contribute to the study , see : Neurological study.
 
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  « l’Assemblée Générale Ordinaire de l’association aura lieu le samedi 24 mars de 10h à 16h . Dans les locaux de l’Alliance Maladies Rares, Hôpital Broussais 96, rue Didot – 75014 Paris .Si vous désirez davantage d’informations, vous pouvez contacter Jacques Monnet au 04 78 35 96 32 Ou Véronique Douillet au 01 40 96 97 88 »