Basics of biobanks and registries – types, value, challenges, relevance for patient advocacy

Understanding the mechanism of disease progression is the first step in research and development towards a therapy or cure. Biological materials such as blood, skin, or DNA from patients are necessary for studies to understand the cause of diseases as well as identification of biomarkers, possible mutations, and testing of potential drugs. Demographic and clinical data of patients hold important information on how the disease affect patients and patients’ quality of life.

Biobanks and registries are essential resources that collect and manage patient biological materials and clinical data to enable such studies to take place. Patient involvement can help to further strengthen their generation of meaningful data and knowledge. Hence, for patient advocates, it is essential not only to understand the basics and the value of biobanks and registries, but also how they can be involved in the establishment and implementation of biobanks and what successful collaboration models may look like.

Presentation at the WECAN Academy 2019:

Presenter: Mary Wang, Fondazione Telethon

The following presentation held at the WECAN Academy 2019 will help you to understand:

• the basics of biobanks and registries
• what are the different types of biobanks and registries
• what is their value to patients, to research and to healthcare systems
• how they enable different types of research and development
• how patient organisations can be involved or establish registries or biobanks how do registries differentiate from what is described as “real world evidence / data”
• what is the relevance of biobanks and registries for patient advocacy
• two case studies of patient-driven collaborations for creation of sample collections and registry

Download slides here (PDF)

• Biobanking from the patient perspective, D Mitchell, J. Geissler, A Parry-Jones, H Keulen, D Schmitt, R Vavassori, B Matharoo-Ball., Research Involvolvement and Engagement (2015) 1: 4. https://doi.org/10.1186/s40900-015-0001-z
• Biobank case study: The alliance between genetic biobanks and patient organisations: the experience of the Telethon network of genetic biobanks. (Baldo et al., 2016 Orphanet J Rare Dis. https://doi.org/10.1186/s13023-016-0527-7)
• Registry case study: The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage. (Ambrosini et al., 2018 Orphanet J Rare Dis. https://doi.org/10.1186/s13023-018-0918-z)