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.

Acronym JPNDWG00481 (Reference Number: JPNDWG00481)
Duration 01/01/2014 - 01/01/2015
Project Topic Neurodegenerative disease
Website visit project website
Network JPND
Call A Call for Proposals for Working Groups to Inform Cohort Studies in Neurodegenerative Disease Research

Project partner

Number Name Role Country
1 VU University Medical Center Amsterdam Coordinator Netherlands