Distilled database identifies genetic links to rare diseases
24 March 2023
Published online 19 September 2019
Global neuroscience initiative calls for diverse data contributions.
A new consortium that aims to collect and analyse images of diseased brains is calling for collaborators from outside Europe and North America. The Uncovering Neurodegenerative Insights Through Ethnic Diversity (UNITED) consortium is a major initiative focused on understanding neurodegenerative diseases such as Alzheimer’s.
UNITED is based at the Erasmus University Medical Center in the Netherlands. It includes partners from 18 countries, the vast majority of which are in Europe and North America, leading the consortium to call for participants from underrepresented regions. “We think it’s extremely important to have an active role in encouraging more diverse studies, so that findings will be generalizable and benefit all individuals, irrespective of their ethnic background,” says epidemiologist Hieab Adams of Erasmus University Rotterdam, The Netherlands, and consortium leader.
With sufficient neuroimaging data, UNITED hopes to create maps of brains with conditions such as Alzheimer’s or Parkinson’s. This will shed light on the morphological architecture of these diseases, enabling researchers to understand what an Alzheimer’s brain looks like and whether certain morphological features can be used to predict a person’s risk of developing a neurodegenerative disease. The brain maps will be made publicly available.
However, the value of these maps will depend on how well they reflect the diversity of human populations. “Most medical research, including on neurodegenerative disorders such as Alzheimer’s and Parkinson’s, has been performed in Europeans,” says Adams. “Populations from other ethnicities are underrepresented, which leads to medical discoveries being less applicable to them, and eventually worse health care compared to Europeans.” By including collaborators from around the world, the UNITED consortium hopes to avoid building maps that reflect the homogeneity of specific regions and instead glean insights from studying the diverse global population.
UNITED is looking for collaborators who can provide data, expertise or other contributions, such as hosting meetings. They aim to reduce the burden on collaborators by providing them with support such as remote data analysis. “At the end of this year, we’re planning to visit the Middle East to discuss the possibilities with interested collaborators,” says Adams. “Only by combining forces can we gain insight into the causes of these diseases and discover new therapies and prevention strategies.”
Adams, H. H. H. et al. The Uncovering Neurodegenerative Insights Through Ethnic Diversity consortium. The Lancet 18, 10 (2019).