Documents
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Network policies and forms
The Network Charter - Sample Standard Operating Procedures (English)
- Material Transfer Agreement (English only)
- Modello dell’informativa e del consenso (Italian)
- Information leaflet and consent form (English)
- Modello di accordo tra una Biobanca e un’Associazione di Pazienti (Italian)
- User Guide for sample access
- Governance of Access
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Guidelines
Genetic Biobank Guidelines (English) - Genetic Biobank Guidelines, Analysis N. 5/6.2003 (Italian)
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Publications
Iacomussi et al. Biopreserv Biobank. 2021;19(6):483-492 - Baldo et al. Orphanet J Rare Dis. 2016;11(1):142
- Filocamo et al. Orphanet J Rare Dis. 2013;8:129
- Mora et al. Eur J Hum Genet. 2015;23(9):1116-1123
- List of publications acknowledging the TNGB (update Dec 20)
- List of publications reporting the TNGB experience
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Biobank Marker Papers
Filocamo et al. Open Journal of Bioresources. 2014;1:e2. - Baldo et al. Open Journal of Bioresources. 2016;3(1):e1.
- Fusco et al. Open Journal of Bioresources. 2015;2(1):Art. e1.
- Mora et al. Open Journal of Bioresources. 2017;4(1):1.
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Outreach Material
Opuscolo informativo Telethon Network of Genetic Biobanks (Italian) - Le biobanche - Video (Italian)
- Le Biobanche e il consenso informato - Video (Italian)
- Il percorso del campione biologico - Video (Italian)
- Il registro di patologia - Video (Italian)
- RD-Connect: an integrated platform for rare disease research - Video (English)
- RD-Connect: una piattaforma integrata per la ricerca sulle malattie rare - Video (Italian)
- Informed consent from the BBMRI.it informed consent matrix - 2019
- Agreement between TNGB and patient organizations - 2017
- Card game on biobanking for public engagement - 2018