THE ROLE OF THE PATIENTS

THE ROLE OF THE PATIENTS IN I.B.AHC

Alternating Hemiplegia (AHC) is a very rare neurological disease, characterized by very complex symptoms and a great heterogeneity.
Because of all these features, it is very difficult   to carry out studies and research projects for this disease,  in terms not only of lack of financing, but also of difficulties to collect a sufficient number of cases to study.

The  I.B.AHC Biobank and the Clinical Registry  can overcome these difficulties.

Thanks to this project, in fact, the clinical data and the biologic samples of a great number of patients are collected, organized and managed so that the possibility can be offered to all the interested researchers to use them quickly and efficiently, to carry out studies and research projects on AHC.

Therefore, the personal motivation and the aware participation of as many patients and parents as possible, are a strategic factor for the success of I.B.AHC.

In fact, in this project all the patients are invited to participate and to collaborate  actively with their treating physicians for the insertion of their clinical data and biological material.

This will allow them to contribute personally to the development of the research of an effective treatment for Alternating Hemiplegia.

Furthermore, through their association, the patients are also involved in the management of I.B.AHC, to guarantee a profitable and ethically correct use of its content.

HOW TO PARTICIPATE TO I.B.AHC

If you are a person affected by AHC, or the parent of a child affected by AHC, and if you are interested in the participation to the I.B.AHC Biobank and Clinical Registry, first of all we want to thank you, on behalf of all the families of A.I.S.EA Onlus.

Your participation, in fact, will increase the number of available data and samples for the research on AHC, and consequently, will  increase the chances to find a cure for all the affected people.

Your participation to  I.B.AHC is free and voluntary; at any time you can withdraw, by sending a written communication to A.I.S.EA Onlus to the address info@aiseaonlus.org

It's not necessary to become a member of A.I.S.EA Onlus to participate to I.B.AHC.

In order to participate to I.B.AHC, you, and both your parents, must first enrol, by signing the Informed Consent  Form.