THE I.B.AHC CLINICAL REGISTRY
The I.B.AHC Clinical Registry contains data belonging to the following categories: genealogy and family history, neurological signs, paroxysmal and non paroxysmal, treatment, biochemical, laboratory, genetic and neuroradiological investigations, video-photographic documentation.
Data are organized in patient-records, identified by the patient CID, composed of a general section and of several follow-up sections, for each category.
If for a patient also the video-photographic documentation is available, the data are considered "complete".
The new on-line Clinical Registry is now available (February 2010), accessible through this same portal.
The authorized users (physicians, patients, researchers) can login using the account (Username and password) they have received from A.I.S.EA at the time of their enrolment (treating physicians and patients) or of the approval of their usage requests (physicians and researchers).
The treating physicians can directly enter the data of their patients in the Registry through some suitable web pages. The patients can consult their own data as they are entered by their treating physicians.
The physicians and researchers can connect to the Registry to execute the queries on the validated patient records and download the resulting data to be used for studies and research on AHC.
The video-photographic documentation will be available only for viewing inside a connection to the Registry.
To login to the I.B.AHC Clinical Registry go to this link
RESPONSIBLES (DATA MANAGERS)
The current Responsibles (Data Managers) of the I.B.AHC Clinical Registry are
Dr Melania Giannotta
Operative Unit NPI - Maggiore Hospital "C.A. Pizzardi" - Bologna
Dr Elisa De Grandis
Operative Unit NPI - G. Gaslini Institute - Genova