Access to high quality data from patients and families is essential for medical and scientific research into genetic diseases.
What biobanks are?
Biobanks are research infrastructures that store and distribute biological samples and associated data for research purposes. They provide important services to facilitate the exchange of resources for the advancement of research.
Telethon Network of Genetic Biobanks (TNGB) was created in 2008 as a project to centralise collections of extremely rare biological samples from patients with genetic diseases.
These precious biological samples are listed in the TNGB online catalogue (http://biobanknetwork.telethon.it), which is open for all to browse. The TNGB has established network charter and a governance model based on transparency, as well as applying standardised operating procedures for sample processing and management to ensure the high quality of the samples across the network. TNGB fosters collaborations with patient organisations; creating specific sample collections and advocates for patient engagement. The network is supported by a scientific advisory board, with experts in biobanking, ethics and patient representatives.
Today, there are 11 genetic biobanks in the TNGB and the sample catalogue contains more than 95,000 biospecimens representing approximately 850 distinct rare genetic diseases.
Researchers worldwide are welcome to browse and request access to the biological samples directly from the TNGB website.