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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
general
Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project
PLoS ONE, Volume 18, No. 10 October, Article e0292180, Year 2023
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Description
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. Copyright: © 2023 Vollstedt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Authors & Co-Authors
Vollstedt, Eva Juliane
Germany, Lubeck
Universität zu Lübeck
Madoev, Harutyun
Germany, Lubeck
Universität zu Lübeck
Ahmad-Annuar, Azlina Binti
Malaysia, Kuala Lumpur
Universiti Malaya
al-Mubarak, Bashayer R.
Saudi Arabia, Riyadh
King Faisal Specialist Hospital and Research Centre
Alcalay, Roy N.
United States, New York
Columbia University
Israel, Tel Aviv-yafo
Tel Aviv Sourasky Medical Center
Israel, Tel Aviv-yafo
Tel Aviv University
Alvarez, Victoria
Spain, Oviedo
Hospital Universitario Central de Asturias
Spain, Oviedo
Instituto de Investigación Sanitaria Del Principado de Asturias
Annesi, Grazia
Italy, Rome
Consiglio Nazionale Delle Ricerche
Arkadir, David
Israel, Jerusalem
Hadassah University Medical Centre
Bardien, Soraya
South Africa, Stellenbosch
Stellenbosch University
South Africa, Tygerberg
South African Medical Research Council
A Barker, Roger A.
United Kingdom, Cambridge
University of Cambridge
Barkhuizen, Melinda
South Africa, Potchefstroom
North-west University
Bonifati, Vincenzo
Netherlands, Rotterdam
Erasmus Mc
Boon, Agnita J.W.
Netherlands, Rotterdam
Erasmus Mc
Brighina, Laura
Italy, Monza
Azienda Ospedaliera San Gerardo Monza
Brockmann, Kathrin
Germany, Tubingen
Eberhard Karls Universität Tübingen
Germany, Tubingen
Hertie-institut Für Klinische Hirnforschung
Belin, Andrea Carmine
Sweden, Stockholm
Karolinska Institutet
Carr, Jonathan A.
South Africa, Tygerberg
South African Medical Research Council
South Africa, Stellenbosch
Stellenbosch University
Clarimón, Jordi
Spain, Barcelona
Institut de Recerca Sant Pau ir Sant Pau
Spain, Madrid
Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas
Cornejo-Olivas, Mario Reynaldo
Peru, Lima
Instituto Nacional de Ciencias Neurologicas
Peru, Lima
Universidad Peruana Cayetano Heredia
Guedes, Leonor Correia
Portugal, Lisbon
Universidade de Lisboa
Corvol, Jean Christophe
France, Paris
Sorbonne Université
Crosiers, David
Belgium, Edegem
Universitair Ziekenhuis Antwerpen
Belgium, Antwerpen
Universiteit Antwerpen
Belgium, Ghent
Vlaams Instituut Voor Biotechnologie
de Carvalho-Aguiar, Patrícia Maria
Brazil, Sao Paulo
Hospital Israelita Albert Einstein
Brazil, Sao Paulo
Universidade Federal de São Paulo
De Rosa, Anna
Italy, Naples
Università Degli Studi Di Napoli Federico Ii
Dorszewska, Jolanta
Poland, Poznan
Poznan University of Medical Sciences
Ertan, Sibel
Turkey, Istanbul
Koç Üniversitesi
Ferese, Rosangela
Italy, Pozzilli
Istituto Neurologico Mediterraneo Neuromed, Pozzilli
Ferreira, Joaquim José
Belgium, Antwerpen
Universiteit Antwerpen
Portugal, Lisbon
Universidade de Lisboa
Gatto, Emilia Mabel
Unknown Affiliation
Genç, Gençer
Turkey, Istanbul
University of Health Sciences
Giladi, Nir
Israel, Tel Aviv-yafo
Tel Aviv Sourasky Medical Center
Israel, Tel Aviv-yafo
Tel Aviv University
Gómez-Garre, Pilar
Spain, Sevilla
Csic-ja-use - Instituto de Biomedicina de Sevilla
Hanaĝasi, Haşmet Ayhan
Turkey, Istanbul
Istanbul Üniversitesi
Hattori, Nobutaka
Japan, Tokyo
Juntendo University School of Medicine
Hentati, Fayçal
Tunisia, Tunis
Institut National de Neurologie Mongi-ben Hamida
Hoffman-Zacharska, Dorota
Poland, Warsaw
University of Warsaw
Jesús, Silvia
Spain, Sevilla
Csic-ja-use - Instituto de Biomedicina de Sevilla
Kievit, Anneke J.A.
Netherlands, Rotterdam
Erasmus Mc
Kostic, V. S.
Serbia, Belgrade
University of Belgrade
Koziorowski, Dariusz Mariusz
Poland, Warsaw
Medical University of Warsaw
Kühn, Andrea A.
Germany, Berlin
Charité – Universitätsmedizin Berlin
Lang, Anthony E.
Canada, Toronto
Toronto Western Hospital University of Toronto
Lim, Shenyang
Malaysia, Kuala Lumpur
Universiti Malaya
Lin, Chinhsien
Taiwan, Taipei
National Taiwan University College of Medicine
Lohmann, Katja
Germany, Lubeck
Universität zu Lübeck
Mellick, George D.
Australia, Brisbane
Griffith University
Merello, Marcelo Lo
Argentina, Buenos Aires
Pontificia Universidad Catolica Argentina
Argentina, Buenos Aires
Fundacion Para la Lucha Contra Las Enfermedades Neurologicas de la Infancia
Argentina, Buenos Aires
Consejo Nacional de Investigaciones Científicas y Técnicas
Milanowski, Łukasz M.
Poland, Warsaw
Medical University of Warsaw
Pimentel, Márcia Mattos Gonçalves Mattos Gonçalves
Brazil, Rio de Janeiro
Universidade do Estado do Rio de Janeiro
Pulkes, Teeratorn
Thailand, Nakhon Pathom
Mahidol University
Puschmann, Andreas J.
Sweden, Lund
Lunds Universitet
Sweden, Lund
Skånes Universitetssjukhus
Rogaeva, Ekaterina A.
Canada, Toronto
University of Toronto
Sammler, Esther M.
United Kingdom, London
Medical Research Council
United Kingdom, Dundee
University of Dundee
Petersen, Maria Skaalum
Faroe Islands, Torshavn
University of the Faroe Islands
Faroe Islands, Torshavn
Faroese Hospital System
Škorvánek, Matej
Slovakia, Kosice
Pavol Jozef Šafárik University in Košice
Slovakia, Kosice
Louis Pasteur University Hospital
Suchowersky, Oksana
Canada, Edmonton
University of Alberta
Tan, Ai Huey
Malaysia, Kuala Lumpur
Universiti Malaya
Termsarasab, Pichet
Thailand, Nakhon Pathom
Mahidol University
Thaler, Avner
Israel, Tel Aviv-yafo
Tel Aviv Sourasky Medical Center
Israel, Tel Aviv-yafo
Tel Aviv University
Tumas, Vítor
Brazil, Sao Paulo
Universidade de São Paulo
Valente, Enza Maria
Italy, Pavia
Università Degli Studi Di Pavia
Italy, Pavia
Irccs Fondazione Mondino
van de Warrenburg, Bart P.C.
Netherlands, Nijmegen
Radboud University Medical Center
Williams-Gray, Caroline H.
United Kingdom, Cambridge
University of Cambridge
Wu, Ruey Meei
Taiwan, Taipei
National Taiwan University College of Medicine
Zimprich, Alexander
Austria, Vienna
Medizinische Universität Wien
Solle, Justin C.
United States, New York
The Michael J. Fox Foundation for Parkinson‘s Research
Padmanabhan, Shalini
United States, New York
The Michael J. Fox Foundation for Parkinson‘s Research
Klein, Christine
Germany, Lubeck
Universität zu Lübeck
Statistics
Authors: 68
Affiliations: 77
Identifiers
Doi:
10.1371/journal.pone.0292180
ISSN:
19326203
Research Areas
Genetics And Genomics
Health System And Policy
Study Design
Cohort Study
Study Approach
Systematic review