Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson's Disease Project
Journal
PloS one
Journal Volume
18
Journal Issue
10
Pages
e0292180
Date Issued
2023-10
Author(s)
Vollstedt, Eva-Juliane
Madoev, Harutyun
Aasly, Anna
Ahmad-Annuar, Azlina
Al-Mubarak, Bashayer
Alcalay, Roy N
Alvarez, Victoria
Amorin, Ignacio
Annesi, Grazia
Arkadir, David
Bardien, Soraya
Barker, Roger A
Barkhuizen, Melinda
Basak, A Nazli
Bonifati, Vincenzo
Boon, Agnita
Brighina, Laura
Brockmann, Kathrin
Carmine Belin, Andrea
Carr, Jonathan
Clarimon, Jordi
Cornejo-Olivas, Mario
Correia Guedes, Leonor
Corvol, Jean-Christophe
Crosiers, David
Damásio, Joana
Das, Parimal
de Carvalho Aguiar, Patricia
De Rosa, Anna
Dorszewska, Jolanta
Ertan, Sibel
Ferese, Rosangela
Ferreira, Joaquim
Gatto, Emilia
Genç, Gençer
Giladi, Nir
Gómez-Garre, Pilar
Hanagasi, Hasmet
Hattori, Nobutaka
Hentati, Faycal
Hoffman-Zacharska, Dorota
Illarioshkin, Sergey N
Jankovic, Joseph
Jesús, Silvia
Kaasinen, Valtteri
Kievit, Anneke
Klivenyi, Peter
Kostic, Vladimir
Koziorowski, Dariusz
Kühn, Andrea A
Lang, Anthony E
Lim, Shen-Yang
Lohmann, Katja
Markovic, Vladana
Martikainen, Mika Henrik
Mellick, George
Merello, Marcelo
Milanowski, Lukasz
Mir, Pablo
Öztop-Çakmak, Özgür
Pimentel, Márcia Mattos Gonçalves
Pulkes, Teeratorn
Puschmann, Andreas
Rogaeva, Ekaterina
Sammler, Esther M
Skaalum Petersen, Maria
Skorvanek, Matej
Spitz, Mariana
Suchowersky, Oksana
Tan, Ai Huey
Termsarasab, Pichet
Thaler, Avner
Tumas, Vitor
Valente, Enza Maria
van de Warrenburg, Bart
Williams-Gray, Caroline H
Wu, Ruey-Mei
Zhang, Baorong
Zimprich, Alexander
Solle, Justin
Padmanabhan, Shalini
Klein, Christine
Abstract
Parkinson's disease (PD) is the fastest-growing neurodegenerative disorder, currently affecting ~7 million people worldwide. PD is clinically and genetically heterogeneous, with at least 10% of all cases explained by a monogenic cause or strong genetic risk factor. However, the vast majority of our present data on monogenic PD is based on the investigation of patients of European White ancestry, leaving a large knowledge gap on monogenic PD in underrepresented populations. Gene-targeted therapies are being developed at a fast pace and have started entering clinical trials. In light of these developments, building a global network of centers working on monogenic PD, fostering collaborative research, and establishing a clinical trial-ready cohort is imperative. Based on a systematic review of the English literature on monogenic PD and a successful team science approach, we have built up a network of 59 sites worldwide and have collected information on the availability of data, biomaterials, and facilities. To enable access to this resource and to foster collaboration across centers, as well as between academia and industry, we have developed an interactive map and online tool allowing for a quick overview of available resources, along with an option to filter for specific items of interest. This initiative is currently being merged with the Global Parkinson's Genetics Program (GP2), which will attract additional centers with a focus on underrepresented sites. This growing resource and tool will facilitate collaborative research and impact the development and testing of new therapies for monogenic and potentially for idiopathic PD patients.
SDGs
Type
journal article