. 2023 Oct 3;18(10):e0292180.

doi: 10.1371/journal.pone.0292180. eCollection 2023.

Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson's Disease Project

Eva-Juliane Vollstedt¹, Harutyun Madoev¹, Anna Aasly², Azlina Ahmad-Annuar³, Bashayer Al-Mubarak⁴, Roy N Alcalay^{5

6}, Victoria Alvarez^{7

8}, Ignacio Amorin⁹, Grazia Annesi¹⁰, David Arkadir¹¹, Soraya Bardien^{12

13}, Roger A Barker¹⁴, Melinda Barkhuizen¹⁵, A Nazli Basak¹⁶, Vincenzo Bonifati¹⁷, Agnita Boon¹⁸, Laura Brighina¹⁹, Kathrin Brockmann^{20

21}, Andrea Carmine Belin²², Jonathan Carr^{13

23}, Jordi Clarimon^{24

25}, Mario Cornejo-Olivas^{26

27}, Leonor Correia Guedes^{28

29}, Jean-Christophe Corvol³⁰, David Crosiers^{31

32

33}, Joana Damásio^{34

35}, Parimal Das³⁶, Patricia de Carvalho Aguiar^{37

38}, Anna De Rosa³⁹, Jolanta Dorszewska⁴⁰, Sibel Ertan⁴¹, Rosangela Ferese⁴², Joaquim Ferreira^{32

43}, Emilia Gatto⁴⁴, Gençer Genç⁴⁵, Nir Giladi⁶, Pilar Gómez-Garre^{46

25}, Hasmet Hanagasi⁴⁷, Nobutaka Hattori⁴⁸, Faycal Hentati⁴⁹, Dorota Hoffman-Zacharska⁵⁰, Sergey N Illarioshkin⁵¹, Joseph Jankovic⁵², Silvia Jesús^{46

25}, Valtteri Kaasinen^{53

54

55}, Anneke Kievit¹⁷, Peter Klivenyi⁵⁶, Vladimir Kostic⁵⁷, Dariusz Koziorowski⁵⁸, Andrea A Kühn⁵⁹, Anthony E Lang⁶⁰, Shen-Yang Lim⁶¹, Chin-Hsien Lin⁶², Katja Lohmann¹, Vladana Markovic⁵⁷, Mika Henrik Martikainen^{53

55

63}, George Mellick⁶⁴, Marcelo Merello^{63

65

66}, Lukasz Milanowski⁵⁸, Pablo Mir^{46

25}, Özgür Öztop-Çakmak⁴¹, Márcia Mattos Gonçalves Pimentel⁶⁷, Teeratorn Pulkes⁶⁸, Andreas Puschmann^{69

70}, Ekaterina Rogaeva⁷¹, Esther M Sammler^{72

73}, Maria Skaalum Petersen^{74

75}, Matej Skorvanek^{76

77}, Mariana Spitz⁷⁸, Oksana Suchowersky⁷⁹, Ai Huey Tan⁶¹, Pichet Termsarasab⁶⁸, Avner Thaler⁶, Vitor Tumas⁸⁰, Enza Maria Valente^{81

82}, Bart van de Warrenburg⁸³, Caroline H Williams-Gray¹⁴, Ruey-Mei Wu⁶², Baorong Zhang⁸⁴, Alexander Zimprich⁸⁵, Justin Solle⁸⁶, Shalini Padmanabhan⁸⁶, Christine Klein¹

Affiliations

¹ Institute of Neurogenetics, University of Luebeck, Luebeck, Germany.
² Department of Neuromedicine and Movement Science, Norwegian University of Science and Technology, Trondheim, Norway.
³ Department of Biomedical Science, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
⁴ Center for Genomic Medicine, Research Centre, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
⁵ Department of Neurology, Columbia University, New York, New York, United States of America.
⁶ Neurological Institute, Tel-Aviv Medical Center, Tel-Aviv, Israel; Sackler School of Medicine, Sagol School of Neuroscience, Tel-Aviv University, Tel-Aviv, Israel.
⁷ Laboratório de Genética, Hospital Universitario Central de Asturias, Oviedo, Asturias, Spain.
⁸ Instituto de Investigación Sanitaria del Principado de Asturias (ISPA), Oviedo, Spain.
⁹ Universidad de la Republica Uruguay, Montevideo, Uruguay.
¹⁰ Institute of Biomedical Research and Innovation, National Research Council, Cosenza, Italy.
¹¹ Department of Neurology, Hadassah Medical Center and the Hebrew University, Jerusalem, Israel.
¹² Division of Molecular Biology and Human Genetics, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
¹³ South African Medical Research Council/Stellenbosch University Genomics of Brain Disorders Research Unit, Stellenbosch University, Cape Town, South Africa.
¹⁴ Department of Clinical Neurosciences, University of Cambridge, Cambridge, United Kingdom.
¹⁵ DST/NWU Preclinical Drug Development Platform, North-West University, Potchefstroom, North-West, South Africa.
¹⁶ Suna and Inan Kiraç Foundation, Neurodegeneration Research Laboratory, KUTTAM, School of Medicine, Koç University, Istanbul, Turkey.
¹⁷ Department of Clinical Genetics, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.
¹⁸ Department of Neurology, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands.
¹⁹ Department of Neurology, Milan Center for Neuroscience, University of Milano-Bicocca/San Gerardo Hospital, Monza, Monza Brianza, Italy.
²⁰ Department of Neurodegenerative Diseases, University of Tuebingen, Tuebingen, Baden Wuerttemberg, Germany.
²¹ Hertie Institute for Clinical Brain Research and German Centre for Neurodegenerative Diseases, Tuebingen, Baden Wuerttemberg, Germany.
²² Department of Neuroscience, Karolinska Institutet, Stockholm, Sweden.
²³ Division of Neurology, Department of Medicine, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
²⁴ Department of Neurology, Biomedical Research Institute IIB-Sant Pau, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
²⁵ Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED), Madrid, Spain.
²⁶ Neurogenetics Research Center, Instituto Nacional de Ciencias Neurologicas, Lima, Peru.
²⁷ Center for Global Health, Universidad Peruana Cayetano Heredia, Lima, Peru.
²⁸ Centro de Estudos Egas Moniz, Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal.
²⁹ Instituto de Medicina Molecular João Lobo Antunes, Faculty of Medicine, University of Lisbon, Lisbon, Portugal.
³⁰ Paris Brain Institute-ICM, Inserm, CNRS, Assistance Publique Hôpitaux de Paris, Pitié-Salpêtrière Hospital, Department of Neurology, Sorbonne University, Paris, France.
³¹ Department of Neurology, Antwerp University Hospital, Edegem, Belgium.
³² Translational Neurosciences, Born Bunge Institute, Faculty of Medicine and Health Sciences, University of Antwerp, Wilrijk, Antwerp, Belgium.
³³ Center for Molecular Neurology, VIB, Wilrijk, Antwerp, Belgium.
³⁴ Department of Neurology, Hospital de Santo António-Centro Hospitalar Universitário do Porto, Porto, Portugal.
³⁵ UnIGENe, Instituto de Biologia Molecular e Celular (IBMC), Instituto de Investigação e Inovação em Saúde (i3S), Universidade do Porto, Porto, Portugal.
³⁶ Centre for Genetic Disorders, Institute of Science, Banaras Hindu University, Varanasi, Uttar Pradesh, India.
³⁷ Hospital Israelita Albert Einstein, São Paulo, Brazil.
³⁸ Department of Neurology and Neurosurgery, Universidade Federal de São Paulo, São Paulo, Brazil.
³⁹ Department of Neurosciences and Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy.
⁴⁰ Laboratory of Neurobiology, Department of Neurology, Poznan University of Medical Sciences, Poznan, Poland.
⁴¹ Department of Neurology, School of Medicine, Koç University, Istanbul, Turkey.
⁴² IRCCS Neuromed, Localita' Camerelle, Pozzilli, Isernia, Italy.
⁴³ Laboratory of Clinical Pharmacology and Therapeutics, University of Lisbon, Lisbon, Portugal.
⁴⁴ Movement Disorders, Department of Neurology, Instituto de Neurosciencias Buenos Aires, Buenos Aires, Argentina.
⁴⁵ Department of Neurology, University of Health Sciences, Şişli Hamidiye Etfal Training and Research Hospital, İstanbul, Turkey.
⁴⁶ Unidad de Trastornos del Movimiento, Servicio de Neurología y Neurofisiología Clínica, Instituto de Biomedicina de Sevilla, Hospital Universitario Virgen del Rocío/CSIC/Universidad de Sevilla, Seville, Spain.
⁴⁷ Department of Neurology, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey.
⁴⁸ Department of Neurology, Juntendo University School of Medicine, Bunkyo, Tokyo, Japan.
⁴⁹ Mongi Ben Hmida National Institute of Neurology, Tunis, Tunisia.
⁵⁰ Institute of Genetics and Biotechnology, Faculty of Biology, University of Warsaw, Warsaw, Poland.
⁵¹ Department of Neurogenetics, Research Center of Neurology, Moscow, Russia.
⁵² Parkinson's Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas, United States of America.
⁵³ Neurocenter, Turku University Hospital, Turku, Finland.
⁵⁴ Department of Neurology, Satasairaala Hospital, Pori, Finland.
⁵⁵ Clinical Neurosciences, Faculty of Medicine, University of Turku, Turku, Finland.
⁵⁶ Department of Neurology, University of Szeged, Szeged, Hungary.
⁵⁷ Department for Neurodegeneration, Clinic for Neurology UCCS, Medical Faculty, University of Belgrade, Belgrade, Serbia.
⁵⁸ Department of Neurology, Faculty of Health Science, Medical University in Warsaw, Warsaw, Poland.
⁵⁹ Movement Disorder and Neuromodulation Unit, Charité, Department of Neurology, Campus Mitte, Universitätsmedizin Berlin, Berlin, Germany.
⁶⁰ Edmond J. Safra Program in Parkinson's Disease, Division of Neurology, Department of Medicine, Toronto Western Hospital, University of Toronto, Toronto, Ontario, Canada.
⁶¹ Division of Neurology, Department of Medicine, and the Mah Pooi Soo & Tan Chin Nam Centre for Parkinson's & Related Disorders, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
⁶² Department of Neurology, National Taiwan University Hospital, National Taiwan University College of Medicine, Taipei, Taiwan.
⁶³ Pontificia Universidad Católica Argentina (UCA), Buenos Aires, Argentina.
⁶⁴ Griffith Institute for Drug Discovery (GRIDD), School of Environment and Science, Griffith University, Brisbane, Queensland, Australia.
⁶⁵ Sección Movimientos Anormales, Departamento de Neurociencias, Fleni, Buenos Aires, Argentina.
⁶⁶ Argentine National Scientific and Technological Research Council (CONICET), Buenos Aires, Argentina.
⁶⁷ Department of Genetics, Institute of Biology Roberto Alcantara Gomes, State University of Rio de Janeiro, Rio de Janeiro, Brazil.
⁶⁸ Division of Neurology, Department of Medicine, Ramathibodi Hospital, Mahidol University, Rajthevi, Bangkok, Thailand.
⁶⁹ Department of Neurology, Lund University, Lund, Sweden.
⁷⁰ Department of Neurology, Skåne University Hospital, Lund, Sweden.
⁷¹ Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada.
⁷² Medical Research Council Protein Phosphorylation and Ubiquitylation Unit, University of Dundee, Dundee, United Kingdom.
⁷³ Molecular and Clinical Medicine, Ninewells Hospital and Medical School, University of Dundee, Dundee, United Kingdom.
⁷⁴ Centre of Health Science, University of the Faroe Islands, Tórshavn, Faroe Islands.
⁷⁵ Department of Occupational Medicine and Public Health, The Faroese Hospital System, Tórshavn, Faroe Islands.
⁷⁶ Pavol Jozef Šafárik University in Košice, Košice, Slovakia.
⁷⁷ Department of Neurology, University Hospital L. Pasteur, Kosice, Slovakia.
⁷⁸ Neurology Service, State University of Rio de Janeiro, Rio de Janeiro, Rio de Janeiro, Brazil.
⁷⁹ Department of Medicine, Medical Genetics and Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
⁸⁰ Behavioral and Movement Disorders Section, Ribeirão Preto Medical School, University of São Paulo, São Paulo, Brazil.
⁸¹ Department of Molecular Medicine, University of Pavia, Pavia, Italy.
⁸² Neurogenetics Research Centre, IRCCS Mondino Foundation, Pavia, Italy.
⁸³ Department of Neurology, Donders Institute for Brain, Cognition, and Behavior, Radboud University Medical Centre, Nijmegen, The Netherlands.
⁸⁴ Department of Neurology, Second Affiliated Hospital, College of Medicine, Zhejiang University, Hangzhou, Zhejiang, China.
⁸⁵ Department of Neurology, Medical University, Vienna, Austria.
⁸⁶ The Michael J. Fox Foundation for Parkinson's Research, New York, NY, United States of America.

PMID: 37788254
PMCID: PMC10547150
DOI: 10.1371/journal.pone.0292180

Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson's Disease Project

Eva-Juliane Vollstedt et al. PLoS One. 2023.

. 2023 Oct 3;18(10):e0292180.

doi: 10.1371/journal.pone.0292180. eCollection 2023.

Authors

Affiliations

¹ Institute of Neurogenetics, University of Luebeck, Luebeck, Germany.
² Department of Neuromedicine and Movement Science, Norwegian University of Science and Technology, Trondheim, Norway.
³ Department of Biomedical Science, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
⁴ Center for Genomic Medicine, Research Centre, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
⁵ Department of Neurology, Columbia University, New York, New York, United States of America.
⁶ Neurological Institute, Tel-Aviv Medical Center, Tel-Aviv, Israel; Sackler School of Medicine, Sagol School of Neuroscience, Tel-Aviv University, Tel-Aviv, Israel.
⁷ Laboratório de Genética, Hospital Universitario Central de Asturias, Oviedo, Asturias, Spain.
⁸ Instituto de Investigación Sanitaria del Principado de Asturias (ISPA), Oviedo, Spain.
⁹ Universidad de la Republica Uruguay, Montevideo, Uruguay.
¹⁰ Institute of Biomedical Research and Innovation, National Research Council, Cosenza, Italy.
¹¹ Department of Neurology, Hadassah Medical Center and the Hebrew University, Jerusalem, Israel.
¹² Division of Molecular Biology and Human Genetics, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
¹³ South African Medical Research Council/Stellenbosch University Genomics of Brain Disorders Research Unit, Stellenbosch University, Cape Town, South Africa.
¹⁴ Department of Clinical Neurosciences, University of Cambridge, Cambridge, United Kingdom.
¹⁵ DST/NWU Preclinical Drug Development Platform, North-West University, Potchefstroom, North-West, South Africa.
¹⁶ Suna and Inan Kiraç Foundation, Neurodegeneration Research Laboratory, KUTTAM, School of Medicine, Koç University, Istanbul, Turkey.
¹⁷ Department of Clinical Genetics, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.
¹⁸ Department of Neurology, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands.
¹⁹ Department of Neurology, Milan Center for Neuroscience, University of Milano-Bicocca/San Gerardo Hospital, Monza, Monza Brianza, Italy.
²⁰ Department of Neurodegenerative Diseases, University of Tuebingen, Tuebingen, Baden Wuerttemberg, Germany.
²¹ Hertie Institute for Clinical Brain Research and German Centre for Neurodegenerative Diseases, Tuebingen, Baden Wuerttemberg, Germany.
²² Department of Neuroscience, Karolinska Institutet, Stockholm, Sweden.
²³ Division of Neurology, Department of Medicine, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
²⁴ Department of Neurology, Biomedical Research Institute IIB-Sant Pau, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain.
²⁵ Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED), Madrid, Spain.
²⁶ Neurogenetics Research Center, Instituto Nacional de Ciencias Neurologicas, Lima, Peru.
²⁷ Center for Global Health, Universidad Peruana Cayetano Heredia, Lima, Peru.
²⁸ Centro de Estudos Egas Moniz, Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal.
²⁹ Instituto de Medicina Molecular João Lobo Antunes, Faculty of Medicine, University of Lisbon, Lisbon, Portugal.
³⁰ Paris Brain Institute-ICM, Inserm, CNRS, Assistance Publique Hôpitaux de Paris, Pitié-Salpêtrière Hospital, Department of Neurology, Sorbonne University, Paris, France.
³¹ Department of Neurology, Antwerp University Hospital, Edegem, Belgium.
³² Translational Neurosciences, Born Bunge Institute, Faculty of Medicine and Health Sciences, University of Antwerp, Wilrijk, Antwerp, Belgium.
³³ Center for Molecular Neurology, VIB, Wilrijk, Antwerp, Belgium.
³⁴ Department of Neurology, Hospital de Santo António-Centro Hospitalar Universitário do Porto, Porto, Portugal.
³⁵ UnIGENe, Instituto de Biologia Molecular e Celular (IBMC), Instituto de Investigação e Inovação em Saúde (i3S), Universidade do Porto, Porto, Portugal.
³⁶ Centre for Genetic Disorders, Institute of Science, Banaras Hindu University, Varanasi, Uttar Pradesh, India.
³⁷ Hospital Israelita Albert Einstein, São Paulo, Brazil.
³⁸ Department of Neurology and Neurosurgery, Universidade Federal de São Paulo, São Paulo, Brazil.
³⁹ Department of Neurosciences and Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy.
⁴⁰ Laboratory of Neurobiology, Department of Neurology, Poznan University of Medical Sciences, Poznan, Poland.
⁴¹ Department of Neurology, School of Medicine, Koç University, Istanbul, Turkey.
⁴² IRCCS Neuromed, Localita' Camerelle, Pozzilli, Isernia, Italy.
⁴³ Laboratory of Clinical Pharmacology and Therapeutics, University of Lisbon, Lisbon, Portugal.
⁴⁴ Movement Disorders, Department of Neurology, Instituto de Neurosciencias Buenos Aires, Buenos Aires, Argentina.
⁴⁵ Department of Neurology, University of Health Sciences, Şişli Hamidiye Etfal Training and Research Hospital, İstanbul, Turkey.
⁴⁶ Unidad de Trastornos del Movimiento, Servicio de Neurología y Neurofisiología Clínica, Instituto de Biomedicina de Sevilla, Hospital Universitario Virgen del Rocío/CSIC/Universidad de Sevilla, Seville, Spain.
⁴⁷ Department of Neurology, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey.
⁴⁸ Department of Neurology, Juntendo University School of Medicine, Bunkyo, Tokyo, Japan.
⁴⁹ Mongi Ben Hmida National Institute of Neurology, Tunis, Tunisia.
⁵⁰ Institute of Genetics and Biotechnology, Faculty of Biology, University of Warsaw, Warsaw, Poland.
⁵¹ Department of Neurogenetics, Research Center of Neurology, Moscow, Russia.
⁵² Parkinson's Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas, United States of America.
⁵³ Neurocenter, Turku University Hospital, Turku, Finland.
⁵⁴ Department of Neurology, Satasairaala Hospital, Pori, Finland.
⁵⁵ Clinical Neurosciences, Faculty of Medicine, University of Turku, Turku, Finland.
⁵⁶ Department of Neurology, University of Szeged, Szeged, Hungary.
⁵⁷ Department for Neurodegeneration, Clinic for Neurology UCCS, Medical Faculty, University of Belgrade, Belgrade, Serbia.
⁵⁸ Department of Neurology, Faculty of Health Science, Medical University in Warsaw, Warsaw, Poland.
⁵⁹ Movement Disorder and Neuromodulation Unit, Charité, Department of Neurology, Campus Mitte, Universitätsmedizin Berlin, Berlin, Germany.
⁶⁰ Edmond J. Safra Program in Parkinson's Disease, Division of Neurology, Department of Medicine, Toronto Western Hospital, University of Toronto, Toronto, Ontario, Canada.
⁶¹ Division of Neurology, Department of Medicine, and the Mah Pooi Soo & Tan Chin Nam Centre for Parkinson's & Related Disorders, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
⁶² Department of Neurology, National Taiwan University Hospital, National Taiwan University College of Medicine, Taipei, Taiwan.
⁶³ Pontificia Universidad Católica Argentina (UCA), Buenos Aires, Argentina.
⁶⁴ Griffith Institute for Drug Discovery (GRIDD), School of Environment and Science, Griffith University, Brisbane, Queensland, Australia.
⁶⁵ Sección Movimientos Anormales, Departamento de Neurociencias, Fleni, Buenos Aires, Argentina.
⁶⁶ Argentine National Scientific and Technological Research Council (CONICET), Buenos Aires, Argentina.
⁶⁷ Department of Genetics, Institute of Biology Roberto Alcantara Gomes, State University of Rio de Janeiro, Rio de Janeiro, Brazil.
⁶⁸ Division of Neurology, Department of Medicine, Ramathibodi Hospital, Mahidol University, Rajthevi, Bangkok, Thailand.
⁶⁹ Department of Neurology, Lund University, Lund, Sweden.
⁷⁰ Department of Neurology, Skåne University Hospital, Lund, Sweden.
⁷¹ Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada.
⁷² Medical Research Council Protein Phosphorylation and Ubiquitylation Unit, University of Dundee, Dundee, United Kingdom.
⁷³ Molecular and Clinical Medicine, Ninewells Hospital and Medical School, University of Dundee, Dundee, United Kingdom.
⁷⁴ Centre of Health Science, University of the Faroe Islands, Tórshavn, Faroe Islands.
⁷⁵ Department of Occupational Medicine and Public Health, The Faroese Hospital System, Tórshavn, Faroe Islands.
⁷⁶ Pavol Jozef Šafárik University in Košice, Košice, Slovakia.
⁷⁷ Department of Neurology, University Hospital L. Pasteur, Kosice, Slovakia.
⁷⁸ Neurology Service, State University of Rio de Janeiro, Rio de Janeiro, Rio de Janeiro, Brazil.
⁷⁹ Department of Medicine, Medical Genetics and Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
⁸⁰ Behavioral and Movement Disorders Section, Ribeirão Preto Medical School, University of São Paulo, São Paulo, Brazil.
⁸¹ Department of Molecular Medicine, University of Pavia, Pavia, Italy.
⁸² Neurogenetics Research Centre, IRCCS Mondino Foundation, Pavia, Italy.
⁸³ Department of Neurology, Donders Institute for Brain, Cognition, and Behavior, Radboud University Medical Centre, Nijmegen, The Netherlands.
⁸⁴ Department of Neurology, Second Affiliated Hospital, College of Medicine, Zhejiang University, Hangzhou, Zhejiang, China.
⁸⁵ Department of Neurology, Medical University, Vienna, Austria.
⁸⁶ The Michael J. Fox Foundation for Parkinson's Research, New York, NY, United States of America.

PMID: 37788254
PMCID: PMC10547150
DOI: 10.1371/journal.pone.0292180

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.

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.

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Conflict of interest statement

I have read the journal’s policy and the authors of this manuscript have the following competing interests: Roy N. Alcalay received consulting fees from Avrobio, Caraway, Ono Therapeutics, GSK, Merck, Sanofi, Janssen and grants from the Michael J. Fox Foundation, DOD, the Parkinson’s Disease Foundation, and the NIH. Melinda Barkhuizen received a PhD scholarship from the National Research Foundation of South Africa (grant numbers 89230 and 98217) and internal funding from the research center where the study was conducted (DST/NWU Preclinical Drug Development Platform, North-West University, South Africa); Ampath Pathology laboratories in South Africa donated services in the form of drawing participant blood for DNA extractions, Several neurologists in South Africa assisted the authors with identifying patients with Parkinson`s disease and referring them to the genotyping study; the North-West University, South Africa provided Ethical oversight and approval of the genotyping project. Vincenzo Bonifati received grants from Stichting Parkinson Fonds (Netherlands) and Alzheimer Nederland, he received honoraria from the International Parkinson and Movement Disorder Society (MDS), for lectures and as Chair of the International Congress Scientific Program Committee (2020-2021), and from Elsevier Ltd. as co-Editor in Chief of the journal Parkinsonism & Related Disorders (2018-current); he is unpaid member of the Stichting Parkinson Fonds (Netherlands). Kathrin Brockmann received grants from the German Federal Ministry of Education and Research (BMBF; PDStrat; FKZ 031L0137B) and from the German Center for Neurodegenerative Diseases (DZNE), consulting fees from Abbvie, Lundbeck, UCB, Zambon, Roche, and honoraria from Abbvie and UCB. Jordi Clarimon is full-time employee at Lundbeck A/S (Denmark). Mario Cornejo-Olivas has subcontracts with Cleveland Clinic and San Marcos Foundation for recruiting participants for the LARGE PD study in Peru. Jean-Christophe Corvol received grants from Sanofi and the Michael J. Fox Foundation, consulting fees from Biogen, UCB, Denali, Idorsia, Prevail therapeutics, Theranexus, and honoraria from Biogen. Joana Damásio received honoraria from Zambon Pharmaceuticals. Anna De Rosa received grants for ROPAD – the Rostock International Parkinson’s Disease Study, sponsored by Centogene and grants from Zambon and AIFA (Italian Agency of Drug), and she is member of the advisory board at BIAL. Joaquim Ferreira received grants from Fundação MSD (Portugal), Novartis, Medtronic, and Abbvie, and lecture fees from Lundbeck, Abbvie, BIAL, Biogen, Sunovion Pharmaceuticals, ONO, Affiris, and Zambon, payment for expert testimony from Novartis, and he participates in advisory boards of Lundbeck, Abbvie, BIAL, Affiris, Sunovion Pharmaceuticals, and Zambon; he is employed by CNS (Campus Néurologico Sénior) and the Medical Faculty of Lisbon. Emilia Gatto received consulting fees from Bago Argentina, honoraria from Bago Argentina,UCB, IPMDS, and Europharm, and participates in advisory boards of Bago Argentina and UCB. Nir Giladi received grants from the Michael J Fox Foundation, The National Parkinson Foundation, The European Union, The Israel Science Foundation Teva, NNE program, Biogen, Ionis, Sieratzki Family Foundation, and The Aufzien Academic Center in Tel-Aviv University; he holds royalties or licenses at Lysosomal Therapeutics (LTI); he received consulting fees from Sionara, NeuroDerm, Pharma2B, Denali, Neuron23, Sanofi-Genzyme, Biogen, and Abbvie; he received honoraria from Abbvie, Sanofi-Genzyme, and the Movement Disorder Society. Nobutaka Hattori received grants from the Japan Society for the Promotion of Science (JSPS; 18H04043, 21H04820, 19K22603), the Japan Agency for Medical Research and Development (AMED; JP20dm0307101, JP20dm0207070, JP20ek0109358, JP19ek0109393, JP19gm0710011, JP19km0405206), Health Labour Sciences Research Grant (20FC1049, H29-FC1-062, H29-FC1-033), and the Japan Science and Technology Agency (JPMJMS2024-5); he participates in advisory boards at Dai-Nippon Sumitomo Pharma, Takeda Pharmaceutical, Kyowa Kirin, TEIJIN PHARMA LIMITED, Novartis Pharma, Ono Pharmaceutical, Biogen Idec Japan, and Kissei Pharmaceutical; he receives consulting fees from Hisamitsu Pharma; he received honoraria from Dai-Nippon Sumitomo Pharma, Takeda Pharmaceutical, Kyowa Kirin, AbbVie GK, Nippon Boehringer Ingelheim, Otsuka Pharmaceutical, Novartis Pharma, Bristol-Myers Squibb, Ono Pharmaceutical, FP Pharmaceutical, Eisai, Kissei Pharmaceutical, Nihon Medi-physics, and Daiichi Sankyo; he received payment for expert testimony from Mitsubishi Tanabe Pharma; he received support for attending meeting from Takeda Pharmaceutical, and Kyowa Kirin; he has 17 patents planned or pending and 5 issued; he is Team Leader at the Neurodegenerative Disorders Collaborative Laboratory, RIKEN Center for Brain Science; he holds equity stock (8%) of PARKINSON Laboratories Co. Ltd., unrelated to the submitted work. Silvia Jesús has received grants from “Consejería de Salud y Familias” PI-0459-2018, “acción B Clínicos-Investigdores” B-0007-2019 and from the “instituto de Salud Carlos III” PI-18/01898; she received honoraria from Abbvie, Bial, Merz, UCB, Italfarmaco, Zambon and Server. Valtteri Kaasinen received grants from Turku University Foundation, Päivikki and Sakari Sohlberg Foundation, and the Finnish Cultural Foundation; he received consulting fees from Nordic Infucare, Abbvie, and Adamant Health; he received honoraria from Nordic Infucare and Abbvie; he received Support for attending meetings and/or travel from Nordic Infucare; he participates on a Data Safety Monitoring Board or Advisory Board at Nordic Infucare and Abbvie; he is board member of the Finnish Neurological Society. Christine Klein received royalties from Oxford University Press; she received consulting fees from Centogene and Retromer Therapeutics; she received payment or honoraria from Desitin Pharma; she received support to attend meetings from the Movement Disorder Society; she participates on a Data Safety Monitoring Board or Advisory Board at the Else Kroener Fresenius Foundation. Peter Klivenyi received honoraria from Abbvie and Medtronic. Vladimir Kostic received Grant 17590 from the Ministry of Education, Science and Technological Development of Serbia; he received honoraria from Novartis and Boehringer Ingelheim. Shen-Yang Lim received the following grants, (i) Stipend - Global Parkinson’s Genetics Program (GP2) Working Group Co-Lead Award, from the Michael J. Fox Foundation, (ii) Michael J. Fox Foundation (Grant 18305: "Identifying leucocyte and urine biomarkers in PD patients with LRRK2 G2385R variant"). George Mellick received grants from the National Health and Medical Research Foundation, Australia (APP1151854, APP1084560). Lukasz Milanowski received grants from the Polish National Agency for Academic Exchange Iwanowska’s Fellowship PPN/IWA/2018/1/00006/U/00001/01, the APDA, the Foundation for Polish Science (FNP) and the Haworth Family Professorship in Neurodegenerative Diseases Fund. Pablo mir received grants from the Spanish Ministry of Science and Innovation (RTC2019-007150-1), the Instituto de Salud Carlos III-Fondo Europeo de Desarrollo Regional (ISCIII-FEDER, PI19/01576), and the Consejería de Salud y Bienestar Social de la Junta de Andalucía (PE-0210-2018); he received payment or honoraria for lectures from Abbvie, Abbott, and Zambon; he received Support for attending meetings and travel from Abbvie. Shalini Padmanabhan is employed by the Michael J. Fox Foundation. Andreas Puschmann received grants from Region Skåne, Sweden, Skåne University Hospital, Sweden, The Swedish Parkinson Academy, The Swedish Parkinson Foundation (Parkinsonfonden), MultiPark – a strategic research environment at Lund University, and Bundy Academy, Sweden; he received honoraria from Elsevier (Associate editor for Parkinsonism and Related Disorders), from the International Parkinson and Movement Disorder Society (MDS), and from the International Association of Parkinsonism and Related Disorders; he received support for travels from the International Association of Parkinsonism and Related Disorders; he is board member of the International Association of Parkinsonism and Related Disorders. Mariana Spitz received funding from Centogene for the ROPAD study; she received support for travels from Roche. Justin Solle is employed by the Michel J. Fox Foundation. Oksana Suchowersky received grants from Roche and WaveLifeSciences; she holds royalties or licenses at UpToDate; she received consulting fees from Abbvie and Sunovion; she received honoraria from the World Parkinson Conference; she participates in advisory boards at Alexion; she is board member of the Parkinson Society Alberta. Pichet Termsarasab received book royalties from Elsevier and Springer Nature Switzerland; he received honoraria for manuscript writing from MedLink Neurology and for lectures from Viatris. Bart van de Warrenburg received grants from Radboudumc, ZonMW, Hersenstichting, Gossweiler Foundation, and the Michael J Fox Foundation; he holds royalties or licenses at BSL Springer Nature; he received consulting fees from uniQure; he received honoraria from UKM Medical Center Kuala Lumpur; he participates in Medical advisory board of patient organizations (unpaid); he is unpaid member of Steering committees or executive boards of various research consortia; he received a wearable sensor set by Brugling Fund/Hersenstichting. Caroline H. Williams-Gray collaborates with Astra-Zeneca on the microbiome in Parkinson’s disease; she received consultancy fees from Modus Outcomes and Evidera, Inc./GlaxoSmithKline; she received honoraria from Profile Pharma Limited. Eva-Juliane Vollstedt, Harutyun Madoev, Anna Aasly, Azlina Ahmad-Annuar, Bashayer Al-Mubarak, Victoria Alvarez, Ignacio Amorin, Grazia Annesi, David Arkadir, Soraya Bardien, Roger A. Barker, A. Nazli Basak, Agnita Boon, Laura Brighina, Andrea Carmine Belin, Jonathan Carr, Leonor Correia Guedes, David Crosiers, Parimal Das, Patricia de Carvalho Aguiar, Jolanta Dorszewska, Sibel Ertan, Rosangela Ferese, Gençer Genç, Pilar Gómez-Garre, Hasmet Hanagasi, Faycal Hentati, Dorota Hoffman-Zacharska, Sergey N. Illarioshkin, Joseph Jankovic, Anneke Kievit, Dariusz Koziorowski, Andrea A. Kühn, Anthony E. Lang, Chin-Hsien Lin, Katja Lohmann, Vladana Markovic, Mika Henrik Martikainen, Marcelo Merello, Özgür Öztop-Çakmak, Márcia Mattos Gonçalves Pimentel, Teeratorn Pulkes, Ekaterina Rogaeva, Esther M. Sammler, Maria Skaalum Petersen, Matej Skorvanek, Ai Huey Tan, Avner Thaler, Vitor Tumas, Enza Maria Valente, Ruey-Mei Wu, Baorong Zhang, and Alexander Zimprich report no conflict of interest. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Figures

**Fig 1. The monogenic resource map.**
This world map displays the distribution of all participating centers worldwide. The pins mark the location of the study centers. Clicking on a pin opens the respective study center profile. The profiles summarize information on the site and the availability of demographic and clinical data, biomaterials, methods, and facilities and provide information on other collaborative projects that the study center is part of.

**Fig 2. Availability of biomaterials.**
Number of centers reporting availability of the listed biomaterials. DNA: Deoxyribonucleic acid, RNA: Ribonucleic acid, CSF: cerebrospinal fluid, iPSCs: induced pluripotent stem cells.

**Fig 3. Availability of methods and facilities.**
Number of centers reporting availability of the listed methods and facilities. CSF: cerebrospinal fluid, iPSCs: induced pluripotent stem cells, MRI: magnetic resonance imaging, SPECT/PET: Single-photon emission computed tomography/positron emission tomography, TCS: transcranial sonography.

See this image and copyright information in PMC

References

1. Bloem BR, Okun MS, Klein C. Parkinson’s disease. The Lancet [Internet]. 2021. Apr; Available from: https://linkinghub.elsevier.com/retrieve/pii/S014067362100218X - PubMed
1. Hentati F, Trinh J, Thompson C, Nosova E, Farrer MJ, Aasly JO. LRRK2 parkinsonism in Tunisia and Norway: A comparative analysis of disease penetrance. Neurology [Internet]. 2014. Aug 5;83(6):568–9. Available from: http://www.neurology.org/cgi/doi/10.1212/WNL.0000000000000675 - DOI - PMC - PubMed
1. Kasten M, Hartmann C, Hampf J, Schaake S, Westenberger A, Vollstedt EJ, et al.. Genotype-Phenotype Relations for the Parkinson’s Disease Genes Parkin, PINK1, DJ1: MDSGene Systematic Review. Movement Disorders [Internet]. 2018. May 11;33(5):730–41. Available from: http://doi.wiley.com/10.1002/mds.27352 - DOI - PubMed
1. Trinh J, Zeldenrust FMJ, Huang J, Kasten M, Schaake S, Petkovic S, et al.. Genotype-phenotype relations for the Parkinson’s disease genes SNCA, LRRK2, VPS35: MDSGene systematic review. Mov Disord [Internet]. 2018. Oct 24; Available from: http://www.ncbi.nlm.nih.gov/pubmed/30357936 doi: 10.1002/mds.27527 - DOI - PubMed
1. Tolosa E, Vila M, Klein C, Rascol O. LRRK2 in Parkinson disease: challenges of clinical trials. Nat Rev Neurol [Internet]. 2020;16(2):97–107. Available from: http://www.ncbi.nlm.nih.gov/pubmed/31980808 doi: 10.1038/s41582-019-0301-2 - DOI - PubMed

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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

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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

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