Introduction

AETIONOMY is aiming to develop a new way to classify Alzheimer’s and Parkinson’s disease. The 5-year-project is funded by the Innovative Medicines Initiative (IMI), a joint undertaking between the European Union and the pharmaceutical industry association EFPIA.

Motivation

Currently, Alzheimer’s disease and Parkinson’s disease are classified by their symptoms and severity but it is clear that this does not represent the many different causes of these diseases. It has been widely recognized that within these broad disease groups there are sub-groups where the different causes result in the symptoms of memory loss or movement disorder. The “mechanism-based taxonomy” AETIONOMY is aiming at will be generated using data derived from a wide range of new biological approaches and will be based on the under­lying causes of the disease.

Challenges & Highlights

A specific challenge the project is facing lies in the fact that for most neurodegenerative diseases the dysfunctional bio­logical pathways underlying the disease are not known. AETIONOMY will therefore have to first define new routes towards the identification of the underlying disease mecha­nisms before organizing these and proposing a rational dis­ease taxonomy for Alzheimer’s and Parkinson’s disease. The AETIONOMY project will therefore involve the collec­tion of all available data including clinical data, imaging, and genetic data. Besides this, it will validate the mecha­nism-based taxonomy at least partially in the course of a prospective clinical study.

Within the project, L3S will ensure legal and ethical compli­ance of the above described research, taking into account the European legal framework as well as international guide­lines. The challenge will be to safeguard patients’ rights on the one side while enabling the envisaged research to be undertaken in AETIONOMY on the other side. A special focus will have to lie on the fact that patients participating in the clinical study whose health data will be analyzed, will in many cases be vulnerable adults not able to give informed consent due to their mental situation or disease progression.