Main services provided by biobanks operating as a single entity:
- DNA/RNA extraction;
- Establishment of cell lines from appropriate tissue;
- Establishment of EBV-transformed lymphoblast cultures from human blood;
- Preservation of biological specimens and recording of the related data for genetic studies;
- Distribution of samples to scientific community for specific research projects;
- Repository services for patients and their families as well as external institutions, which do not have an independent biobank.
Access rules and request approval
General rules of access to the Biobanks are applied to all researchers (including the TNGB staff) according to the following criteria, stated in the Network Charter:
- Samples are made available to users for research purposes, provided that an adequate portion of those samples be safeguarded to the patients' advantage;
- Samples are distributed only to qualified professionals who are associated with recognised research or medical organisations engaged in health-related research or health care;
- Samples are made available upon request which must be adequately justified by the Principal Investigator (PI) by describing the research project, grant sponsor as well as the expected results;
After the request approval, the PI’s organisation is requested to sign the Material Transfer Agreement (MTA) form which includes the Network policies that are:
- samples cannot be used for commercial purposes
- PI will not perform activities aimed at donor’s identification
- samples cannot be distributed to other investigators without written permission of the Biobank
- samples must be used only for the research project declared in the MTA form
- any leftover samples must be destroyed once the project is completed or, in case of reuse, a new request has to be submitted
- PI is expected to feed back the analytic results from each single sample to the Biobank Director, in order to support further research and to give back the results potentially relevant for donor's health
- in the case of publication(s) of the results obtained using the sample(s), PI is expected to acknowledge the Biobank and the Network for having provided the service, and to send a copy of the relevant publication(s) to the Biobank
- paying for shipping and service charges
- The request is granted only if the project employing the samples is feasible and in agreement with TNGB policies;
- No samples are sent out before receiving the signed MTA form.
Particular requests or controversies require special approval by a third-party committee, the Approval/Appeal Panel composed by one member of the Advisory Board, one representative of Fondazione Telethon and and by a third external member selected among the international Scientific Community through the peer-review-based procedures.
Owing to their rarity, some biospecimens could be not available even though they are listed in the catalogue. Users will receive the confirmation of availability only after the online request submission/approval.
All requests are transparently accessible by all partners and by the Telethon Program Manager through the TNGB Information Technology infrastructure.