Both the clinical data and the biological samples kept in I.B.AHC can be utilized by any physician, research group, health care operator for the following activities: analysis, report and presentations, clinical studies and genetic research projects, under the condition that they are:

  1. only about AHC
  2. non lucrative
  3. of a good quality and non duplicated
  4. with the authorization of A.I.S.EA Onlus, on the basis of the evaluation of its Scientific Committee and (in case of usage of the biological material) also of the Ethic Committee of the E. Medea Institute hosting the I.B.AHC Biobank.

To obtain the authorization from A.I.S.EA, the applicant must send a written Usage Request.





Any entries into I.B.AHC are regarded as a use of I.B.AHC, be them the access to the Clinical Registry (for observational purposes, reporting data and information, collating data or information, or the application of data or information) or the use of the biologic material for genetic research.

Use of I.B.AHC is only granted to those subjects (individuals and organizations) who receive written permission from A.I.S.EA Onlus.
A.I.S.EA may limit the use by any or all users as it determines.
All other uses of I.B.AHC are unauthorized and may be illegal.

A.I.S.EA Onlus is fully committed to protecting the privacy and confidentiality of those persons that provided data and information or who are affected directly or indirectly by the use of the data,  information and biological material found in I.B.AHC.

All users of I.B.AHC (treating physicians, patients, research groups, health care operators) must explicitly agree to the following binding terms:

  1. uphold respect for the dignity, privacy, and confidentiality of the patients, families, or any persons affected by the data and information provided in I.B.AHC as the prominent consideration regarding the usage of I.B.AHC.
  2. to be responsible for the authenticity, accuracy, completeness, and quality of the biologic material, of the data and information  introduced into I.B.A.H.C as well as for the results of any analysis and study of the data, information and biologic material found in I.B.AHC.
  3. to agree that any biologic samples, data and information  introduced into I.B.AHC may be shared with all users according to the determinations of its protocols, and that A.I.S.EA Onlus acts as the custodian of all biologic material, data and information in I.B.AHC.
    A.I.S.EA may transfer the custodianship of I.B.AHC and/or the biologic material, the information and data contained in it to a third party or another organization at any time without informing me or seeking my agreement/consent.
  4. to write to AI.S.EA Onlus a request for whatever study or research to carry out making use of I.B.AHC. This written request will include the duration, purpose, methodology, and sought outcomes of the proposed research/study.
    To agree that the request is evaluated by the Scientific Committee of A.I.S.EA Onlus and, in case of a request to use the biological material, by the Ethic Committee of the Scientific Institute E. Medea in Bosisio Parini (LC).
    To agree that the final decision by A.I.S.EA whether to grant me the authorization to use the I.B.AHC content is unquestionable.
  5. To be fully bound to use the data, the information and the biological material found in the I.B.AHC exclusively for the purposes and with the methodology described in my written request to A.I.S.EA Onlus.
  6. To agree to notify A.I.S.EA Onlus of the full results of any studies or research projects that made use of the I.B.AHC content, according to the agreed terms. A.I.S.EA is authorized to insert such results into I.B.AHC, only with the explicit consent of the patients, and to inform those patients who have requested it explicitly.
  7. To agree that any publications derived from the use of the biologic material, the data or information obtained from I.B.AHC will contain an explicit reference to it and that the I.B.AHC Consortium will be included in the author list
  8. To agree not to share the biologic material, the data or the information extracted from I.B.AHC with any third parties prior to receiving written approval from A.I.S.EA Onlus.