Project: Body fluid biobanking of longitudinal cohorts in neurodegenerative diseases
There is a strong interest in research for identification of new neurodegenerative disease (ND) markers in body fluids such as serum, plasma and cerebrospinal fluid (CSF). These body fluids are commonly stored for many years in biobanks to allow longitudinal follow-up of ND patients. Usually, such biobanked body fluids have been collected under different pre-analytical conditions, which often influence the levels of the
biomarkers to be measured. Furthermore, the exact contents of the biobanks and related information are not accessible to third parties, and upon sharing of samples, researchers have to re-invent to wheel with respect to legal, ethical and procedural issues to address during exchange. There are thus three major aspects which hamper the optimal use of biological samples from more than one cohort. These are (a) pre-analytical
procedures and sample specific data, (b) institutional sample access policies (c) standardization and access to sample-associated clinical and imaging data. This Working Group will address the first two aspects, while
the third is being addressed by the Working Group “Integration and analysis of large scale clinical and experimental data”.
The aim of the Working Group is therefore to develop guidelines to enable exchange of biological material between international cohorts of ND patients. This will be accomplished by 1) developing proficiency testing
programs to address biospecimen processing in agreement with current biobanking guidelines, 2) to develop guidelines for exchange of biomaterial, 3) develop datawarehouse framework for biobanked
biospecimens, including development of minimal datasets of biobanked biospecimen information, and links to clinical data.
The Working Group will bring together specialists on ND, biospecimen science and biobanking quality assurance, clinical chemistry and informatics, in order to minimise Biobanking bias and maximise the use of
collected specimens in the scope of ND biomarker research. Implementation of the set of guidelines that will
be developed by this Working Group will make existing and future ND collections of biospecimens visible, accessible and usable. The activities will provide useful tools to improve and assess the quality of
collaborative research on body fluids of longitudinal cohorts.
Project partner
