The patients willing to participate to I.B.AHC, must first inform their treating physicians (neurologists) and request their collaboration.

Also the treating physicians, in fact, must enrol in I.B.AHC, to be able to collaborate with their patients to enter their data in the Clinical Registry and to send their blood samples to the Biobank.

The AHC patients participating to I.B.AHC should ask their treating physicians to consult this portal and, if needed, to contact A.I.S.EA Onlus info@aiseaonlus.org for more information.





The enrolment of the patients and of their parents is composed by the two following steps:

  1. each participant (AHC patient and his/her parents) signs the Informed Consent Form
  2. A.I.S.EA assigns a CID  to each participant; the CID is  the anonymous identification code by which all the clinical data and the biological samples are kept and referenced in I.B.AHC. 

Before signing the Consent Form, each participant should read the attached Informative Letter very carefully.


A.I.S.EA Onlus will communicate their CIDs to all the enrolled participants, by which they will be able to verify on this portal the presence of their clinical data in the I.B.AHC Registry and of their biological material in the I.B.AHC Biobank.


The participating patients will also receive an account (username and  password) by which they will be able to connect to the on-line Clinical Registry through this portal and consul  personally their own clinical data entered by their treating physician.






The Informed Consent Form, for the AHC patient and for his/her parents, are available in the documentation area of this I.B.AHC portal, together with the Informative Letter, the Personal Data Form, and the Filling Instructions.


To have access to all these documents, it's necessary to login to this portal; in case of first login, the registration is required.


After having downloaded and read the documents, the Consent Forms must be signed and sent to the address of A.I.S.EA Onlus.


For any further information, please write to info@ibahc.org.