RESULTS AND FUTURE DEVELOPMENTS

RESULTS

At present, I.B.AHC contains the complete clinical documentation (included the video-photographic documentation) and the biological samples of more than 30 Italian patients.

Several clinical studies and genetic research projects are currently using the I.B.AHC Biobank and/or Clinical Registry; A.I.S.EA Onlus also agreed with their managers, through the signing of the Material and Data Transfer Agreement MDTA, that the individual results will be delivered to those patients that request it explicitly in the signed Consent Form, kept in I.B.AHC  with the consent of the patients, and shared with the scientific community through publications.

I.B.AHC has also become the central node of a network inside which a better circulation of information and ideas is fostered, thus further promoting the start of larger-scale, coordinated and collaborating research projects and activities.

Moreover, through the collegial diagnosis validation sessions and the active participation of the treating physicians, correct and early diagnoses and a better care of the patients have been promoted.

FUTURE DEVELOPMENTS

The new I.B.AHC on line Clinical Registry is now available (February 2010), accessible via Internet in a secure and controlled way: this will allow a more efficient data entry and management and an easier data retrieval.

I.B.AHC will be completely available also in English very soon (On-line Clinical Registry, Related Forms), to facilitate the access by any international research groups, patients and physicians.

I.B.AHC will thus become an even more precious resource, open to everyone, with the contribution of everyone: of the patients, donating  their clinical data and biological material; of the researchers, agreeing to use I.B.AHC in a non-exclusive and collaborative way, and to share the results of their research;  of the treating physicians,  accepting to share the information on their patients and participating actively to the study of the disease, to  support the research and the development of a better social and health care for all the affected patients.