As far as scientific research in rare diseases is concerned, the lack of clinical data and biological samples is one of the main issues, beside the need for funds.
This is the reason why AISP and “Telethon Network of Genetic Biobanks” (TNGB) signed an important scientific collaboration agreement.
Genetic Biobanks are precious resources in the study of genetic diseases because they grant access to the critical mass of biological samples needed to take advantage of the state-of-the-art biotechnologies. The latter are namely based on the analysis of large quantities of samples and data, organised according to scientific criteria and high-quality standards, and made available to researchers all over the world.
After an evaluation of different Biobanks, AISP decided to opt for the services offered by TNGB and, specifically, for the Biobank related to the Istituto Giannina Gaslini
In December 2014 AISP stipulated an agreement with TNGB, concerning the custody of blood samples and dermal fibroblasts of its patients and the sharing of those samples with the international scientific community.
The genetic biobank samples are available only for research and diagnosis
In order to get them, information about the research project or about their use must be provided.
Each request must be always subjected to approval of the research project by a designated committee made up of genetic biobank directors.
Confidentiality is granted through codification of the samples. Thanks to that, it is impossible to discover the donors identity, in compliance with the “Authorisation for the Processing of Genetic Data” issued by the Italian Data Protection Authority (Aut. N. 8/2013).
The updated list of the complete collection of the samples collected by our families, made up of DNA and cell lines, can be currently found at this link.
The samples collected and saved in the Biobank are available for researches all over the world, who can request access to them through the following link
Being aware of the scientific consequences of collection and increased availability of samples, AISP pays for all the related expenses.