PRESENTATION

DESCRIPTION OF I.B.AHC

I.B.AHC - Italian Biobank and Clinical Registry for Alternating Hemiplegia  is a service provided by the association A.I.S.EA Onlus, on behalf of its patients, to the physicians and researchers interested to carry out studies and research projects on Alternating Hemiplegia in Childhood (AHC).

I.B.AHC is composed of two main repositories, the Clinical Registry and the Biological Bank, designed to gather, organise, store, and share the biologic material (DNA, RNA, Cellular Lines) and the clinical data of the patients affected by AHC.

The AHC diagnosis of all the cases entered in the I.B.AHC Biobank and Clinical Registry are collegially validated by the Scientific Committee of A.I.S.EA Onlus and by the treating physicians of the participating patients.

The objectives of I.B.AHC are:

1. To support the scientific research of the causes of AHC and of an effective treatment, by making available the medical and scientific data and the biological material of a large number of validated cases to any research group presenting a written request
   
2. To facilitate the definition of new research lines and the start of new large-scale collaborating projects, through the sharing of the clinical information and the biological material and of  the results of the studies using them, 
   
3. To develop the knowledge of AHC and a better diagnosis and care for the patients, by making available the clinical history (evolution of the symptoms, effectiveness of the drugs ...) of the entered cases and by networking all the involved expertises (researchers, clinicians, patients, rehabilitation therapists, public institutions ...)
   
   

ACCESS TO I.B.AHC

Through this public I.B.AHC portal it is possible to:

1. obtain information about I.B.AHC - Biobank and Clinical Registry for Alternating Hemiplegia, about its architecture and its protocol
   
2. register to the portal, to have access to the documentation area and download all the documents and forms related to the I.B.AHC Biobank and Clinical Registry
   
3. enrol to I.B.AHC,  for the treating physicians, the patients and their parents
   
4. submit a written usage request to use  the content of the I.B.AHC Biobank and Clinical Registry, for clinicians, health-care professionals and research groups, to carry out studies and research projects on AHC
   
5. login to the I.B.AHC on-line Clinical Registry, only for the authorized users, through a secured, protected connection (February 2010)