AETIONOMY project finalises sustainability agreement for knowledge base, data and sample sharing

20/01/2020

AETIONOMY (Organising Mechanistic Knowledge about Neurodegenerative Diseases for the Improvement of Drug Development and Therapy) was an Innovative Medicines Initiative-funded consortium project that ran between January 2014 and December 2018.  Aiming to develop a mechanism-based taxonomy for Alzheimer’s and Parkinson’s disease (PD), AETIONOMY systematically captured and represented existing knowledge on neurodegenerative disease in a computable format, which could then be analysed using algorithms.  In addition, AETIONOMY applied a computational approach to existing and new clinical datasets in order to more accurately model disease progression, mapping disease events to specific biological mechanisms.  Finally, AETIONOMY validated its approach for mechanism-based patient stratification by performing a clinical study that recruited over 400 people living with PD, and by using existing samples and data from ongoing Alzheimer’s disease (AD) cohort studies.

At the end of 2019, partners of the AETIONOMY project (including Alzheimer Europe) agreed the terms of a Sustainability Agreement, which covers the ongoing maintenance of the AETIONOMY knowledge base (KB) and lays out provisions for managing storage of and access to clinical samples and data generated by the project. This agreement will ensure that the AD and PD research communities can continue to benefit from the valuable assets developed by the AETIONOMY project. Under the terms of the Sustainability Agreement, ELIXIR (the European Life-Science Infrastructure for Biological Information) will maintain and host the AETIONOMY KB.  Access to all AETIONOMY data and samples will be governed by a Sustainability Committee, which includes (amongst others) the Academic Coordinator of AETIONOMY, Martin Hofmann-Apitius, and Dianne Gove, Director for Projects at Alzheimer Europe. Data and sample access requests should be addressed to Jean-Christophe Corvol of the Institut du Cerveau et de la Moelle Epinière, Principal Investigator of the AETIONOMY clinical study.

The AETIONOMY project received funding from the Innovative Medicines Initiative Joint Undertaking between the EU & EFPIA, under grant n° 115568.