December 5, 2013
Previously, an interview published on IRDiRC website described the efforts of Telethon Network of Genetic Biobanks (TNGB), a non-profit association of Italian repositories. A peer reviewed article on TNGB appeared in Orphanet Journal of Rare Disease, which reports a 5-year experience of the TNGB. The authors explain that TNGB is a distinctive catalogue of biospecimens and associated data and currently catalogues more than 750 rare genetic defects. This database was created in 2008 in synchronised TNGB “through the adoption of a unique, centrally coordinated, IT infrastructure, which has enabled standardization of all the TNGB procedures and activities, creation of an updated TNGB online catalogue, based on minimal data set and controlled terminologies and finally sample access policy managed via a shared request control panel at web portal”.
The authors outline TNGB’s efforts in providing information to academia, industry and patients organisations both nationally and internationally. According to authors, “during the last 5 years national and international scientists extensively used TNGB with different purposes resulting in more than 250 scientific publications. Moreover, the involvement of patients and families, leading to the formalization of various agreements between TNGB and Patients’ Associations, has demonstrated how promoting Biobank services can be instrumental in gaining a critical mass of samples essential for research, as well as, raising awareness, trust and interest of the general public in Biobanks”.