By Hassan S, Abdullah JM, Wan Din SJ, Idris Z [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons
March 12, 2018

Chordoma Foundation: Patient-led Biobank for Cancer Research

Case study by Daniel Mietchen, University of Virginia

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.

https://www.chordomafoundation.org/

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".

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