Area of work: Biobanks
Role: Full Partner
Phone: +39 02 202217200
Address: Telethon Scientific Office, P.za Cavour, 1, Milan, 20121, Italy
Role in RD-Connect:
Besides coordinating the tasks of mapping rare disease biobanks, distilling shared datasets and standardised coding systems, building a common informatics infrastructure, and liaising with international biobanking networks, Telethon is engaged in building a streamlined biobank workflow for the collection of rare disease biospecimens, preparation and storage of high quality samples, and distribution to scientists engaged in rare disease research, where efficiency, high quality, respect of ethical and legal requirements, as well as engagement of patients and patients organisation will all be pursued.
Within Telethon, the Scientific Office is in charge of the strategic planning and portfolio management of all research initiatives, conducts peer review of all grant applications based on international best practises through dedicated professionals with strong scientific background, and supervises funding activities according to high managerial standards. All research funding decisions are subject to peer-review by an international Scientific Committee and by ad-hoc external reviewers.
Telethon has been supporting genetic biobanks since 1993 and created the 1st network of genetic biobanks (TNGB) in Italy.