Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project
Author(s)
Harutyun Madoev
Anna Aasly
Azlina Ahmad‐Annuar
Bashayer Al‐Mubarak
Roy N. Alcalay
Victoria Álvarez
Ignacio Amorín
Grazia Annesi
David Arkadir
Soraya Bardien
Roger A. Barker
Melinda Barkhuizen
A. Nazlı Başak
Vincenzo Bonifati
Agnita J.W. Boon
Laura Brighina
Kathrin Brockmann
Andrea Carmine Belin
Jonathan Carr
Jordi Clarimón
Mario Cornejo‐Olivas
Leonor Correia Guedes
Jean‐Christophe Corvol
David Crosiers
Joana Damásio
Parimal Das
Patrícia de Carvalho Aguiar
Anna De Rosa
Jolanta Dorszewska
Sibel Ertan
Rosangela Ferese
Joaquim J. Ferreira
Emilia Gatto
Gençer Genç
Nir Giladi
Pilar Gómez‐Garre
Haşmet Hanağası
Nobutaka Hattori
Fayçal Hentati
Dorota Hoffman‐Zacharska
С. Н. Иллариошкин
Joseph Jankovic
Silvia Jesús
Valtteri Kaasinen
Anneke J.A. Kievit
Péter Klivènyi
Vladimir Kostić
Dariusz Koziorowski
Andrea A. Kühn
Anthony E. Lang
Shen‐Yang Lim
Chin‐Hsien Lin
Katja Lohmann
Vladana Marković
Mika H. Martikainen
George D. Mellick
Marcelo Merello
Łukasz Milanowski
Pablo Mir
Özgür Öztop Çakmak
Márcia Mattos Gonçalves Pimentel
Teeratorn Pulkes
Andreas Puschmann
Ekaterina Rogaeva
Esther Sammler
Maria Skaalum Petersen
Matěj Škorvánek
Mariana Spitz
Oksana Suchowersky
Ai Huey Tan
Pichet Termsarasab
Avner Thaler
Vítor Tumas
Enza Maria Valente
Bart P.C. van de Warrenburg
Caroline H. Williams‐Gray
Ruey-Mei Wu
Baorong Zhang
Alexander Zimprich
J Solle
Shalini Padmanabhan
Christine Klein
Date Issued
3 de octubre de 2023
Type
Other
Volume
18
Issue
10
Start Page
e0292180
End Page
e0292180
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.
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