Chordoma is a rare type of tumour, which makes it difficult to obtain tissue
samples in the amounts needed for systematic study. The patient-led Chordoma
Foundation is operating a biobank that pools specimens obtained from
multiple medical centers and makes the tissue accessible to researchers
whose projects received ethical approval.
CS aspect: The research and infrastructure provision is driven and enabled
by a patient organization in close collaboration with researchers
Patients arrange for donations for tumor tissue.
OS aspect: Although ‒ as physical objects ‒ the tissue samples are less
mobile than data, the biobank facilitates global access to research
materials through sharing.
This way, a single specimen can serve multiple research projects, which
contributes to the willingness of patients to donate their tissue.
Contact: for the case study (not the foundation) Daniel Mietchen, Data Science Institute, University of Virginia
Image: By Hassan S, Abdullah JM, Wan Din SJ, Idris Z [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons
This case study is part of the DITOs Policy Brief "Citizen Science and Open Science: Synergies and Future Areas of Work".