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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)
University of Lübeck
Harutyun Madoev
University of Lübeck
Anna Aasly
Norwegian University of Science and Technology
Azlina Ahmad‐Annuar
University of Malaya
Bashayer Al‐Mubarak
King Faisal Specialist Hospital & Research Centre
Roy N. Alcalay
Tel Aviv University
Victoria Álvarez
Hospital Universitario Central de Asturias
Ignacio Amorín
Universidad de la República de Uruguay
Grazia Annesi
National Research Council
David Arkadir
Hebrew University of Jerusalem
Soraya Bardien
South African Medical Research Council
Roger A. Barker
University of Cambridge
Melinda Barkhuizen
North-West University
A. Nazlı Başak
Koç University
Vincenzo Bonifati
Erasmus MC
Agnita J.W. Boon
Erasmus MC
Laura Brighina
Azienda Ospedaliera San Gerardo
Kathrin Brockmann
Hertie Institute for Clinical Brain Research
Andrea Carmine Belin
Karolinska Institutet
Jonathan Carr
South African Medical Research Council
Jordi Clarimón
Hospital de Sant Pau
Mario Cornejo‐Olivas
Universidad Peruana Cayetano Heredia
Leonor Correia Guedes
University of Lisbon
Jean‐Christophe Corvol
Centre National de la Recherche Scientifique
David Crosiers
University of Antwerp
Joana Damásio
Universidade do Porto
Parimal Das
Banaras Hindu University
Patrícia de Carvalho Aguiar
Hospital Israelita Albert Einstein
Anna De Rosa
Federico II University Hospital
Jolanta Dorszewska
Poznan University of Medical Sciences
Sibel Ertan
Koç University
Rosangela Ferese
Istituto Neurologico Mediterraneo
Joaquim J. Ferreira
University of Lisbon
Emilia Gatto
Instituto de Neurología de Buenos Aires
Gençer Genç
Sağlık Bilimleri Üniversitesi
Nir Giladi
Tel Aviv University
Pilar Gómez‐Garre
Biomedical Research Networking Center on Neurodegenerative Diseases
Haşmet Hanağası
Istanbul University
Nobutaka Hattori
Juntendo University
Fayçal Hentati
National Institute of Neurology Mongi-Ben Hamida
Dorota Hoffman‐Zacharska
University of Warsaw
С. Н. Иллариошкин
Joseph Jankovic
Baylor College of Medicine
Silvia Jesús
Biomedical Research Networking Center on Neurodegenerative Diseases
Valtteri Kaasinen
University of Turku
Anneke J.A. Kievit
Erasmus MC
Péter Klivènyi
University of Szeged
Vladimir Kostić
University of Belgrade
Dariusz Koziorowski
Medical University of Warsaw
Andrea A. Kühn
Charité - Universitätsmedizin Berlin
Anthony E. Lang
University of Toronto
Shen‐Yang Lim
University of Malaya
Chin‐Hsien Lin
National Taiwan University
Katja Lohmann
University of Lübeck
Vladana Marković
University of Belgrade
Mika H. Martikainen
University of Turku
George D. Mellick
Griffith University
Marcelo Merello
Consejo Nacional de Investigaciones Científicas y Técnicas
Łukasz Milanowski
Medical University of Warsaw
Pablo Mir
Biomedical Research Networking Center on Neurodegenerative Diseases
Özgür Öztop Çakmak
Koç University
Márcia Mattos Gonçalves Pimentel
Universidade do Estado do Rio de Janeiro
Teeratorn Pulkes
Mahidol University
Andreas Puschmann
Lund University
Ekaterina Rogaeva
University of Toronto
Esther Sammler
University of Dundee
Maria Skaalum Petersen
University of the Faroe Islands
Matěj Škorvánek
University of Pavol Jozef Šafárik
Mariana Spitz
Universidade do Estado do Rio de Janeiro
Oksana Suchowersky
University of Alberta
Ai Huey Tan
University of Malaya
Pichet Termsarasab
Mahidol University
Avner Thaler
Tel Aviv University
Vítor Tumas
Universidade de São Paulo
Enza Maria Valente
University of Pavia
Bart P.C. van de Warrenburg
Radboud University Medical Center
Caroline H. Williams‐Gray
University of Cambridge
Ruey-Mei Wu
National Taiwan University
Baorong Zhang
Second Affiliated Hospital of Zhejiang University
Alexander Zimprich
Medical University of Vienna
J Solle
Michael J. Fox Foundation
Shalini Padmanabhan
Michael J. Fox Foundation
Christine Klein
University of Lübeck
Date Issued
3 de octubre de 2023
Type
Other
Volume
18
Issue
10
Series/Report No.
PLoS ONE
Start Page
e0292180
End Page
e0292180
ISSN
1932-6203
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.
Keywords