I.B.AHC Architecture

 

THE ARCHITECTURE OF I.B.AHC

 

The service provided by I.B.AHC - Italian Biobank and Clinical Registry for Alternating Hemiplegia,  is structured in three physical sections:
  1. B.1 Personal Data Base
    Managed by A.I.S.EA Onlus. It contains the personal data of the patients and the link between such data and the related CID, the anonymous, numeric code used to reference the information kept in the following two sections.
    Tha Personal Data Base is off-line and accessible only by the manager appointed by A.I.S.EA Onlus (currently Dr Filippo Franchini)

  2. B.2 Clinical Registry
    Managed by one or more Data Managers appointed by A.I.S.EA Onlus  (currently Dr Elisa De Grandis and Dr Melania Giannotta).
    It contains the clinical data, the video recordings and the photographs of the participating patients, to be used for clinical and therapeutic studies.
    All these data are identified only by the CIDs.

  3. B.3 Biological Bank
    Managed by the Responsible at the Scientific Institute hosting it, by means of an agreement with A.I.S.EA Onlus (currently Dr. Maria Teresa Bassi, Laboratory of Molecular Biology, Scientific Institute E. Medea (LC)).
    It contains the biological samples of the participating patients (DNA, RNA and cellular lines) and of their parents (DNA only), to be used for genetic research. The samples are identified only by the CIDs.


A subset of the Data in the I.B.AHC Clinical Registry is also copied in the European Registry for AHC, under the management of ENRAH, the European Network for Research on AHC.

The three sections B.1 B.2 B.3 are physically separated but functionally joined by means of the CID, the Patient Identification Code