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.
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.
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
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 firstname.lastname@example.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.