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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

Vollstedt EJ 1 , Madoev H 1 , Aasly A 2 , Ahmad-Annuar A 3 , Al-Mubarak B 4 , Alcalay RN 5 Show all authors , Alvarez V 6 , Amorin I 7 , Annesi G 8 , Arkadir D 9 , Bardien S 10 , Barker RA 11 , Barkhuizen M 12 , Basak AN 13 , Bonifati V 14 , Boon A 15 , Brighina L 16 , Brockmann K 17 , Carmine Belin A 18 , Carr J 19 , Clarimon J 20 , Cornejo-Olivas M 21 , Correia Guedes L 22 , Corvol JC 23 , Crosiers D 24 , Damásio J 25 , Das P 26 , de Carvalho Aguiar P 27 , De Rosa A 28 , Dorszewska J 29 , Ertan S 30 , Ferese R 31 , Ferreira J 32 , Gatto E 33 , Genç G 34 , Giladi N 35 , Gómez-Garre P 36 , Hanagasi H 37 , Hattori N 38 , Hentati F 39 , Hoffman-Zacharska D 40 , Illarioshkin SN 41 , Jankovic J 42 , Jesús S 36 , Kaasinen V 43 , Kievit A 14 , Klivenyi P 44 , Kostic V 45 , Koziorowski D 46 , Kühn AA 47 , Lang AE 48 , Lim SY 49 , Lin CH 50 , Lohmann K 1 , Markovic V 45 , Martikainen MH 43 , Mellick G 51 , Merello M 52 , Milanowski L 46 , Mir P 36 , Öztop-Çakmak Ö 30 , Pimentel MMG 53 , Pulkes T 54 , Puschmann A 55 , Rogaeva E 56 , Sammler EM 57 , Skaalum Petersen M 58 , Skorvanek M 59 , Spitz M 60 , Suchowersky O 61 , Tan AH 49 , Termsarasab P 54 , Thaler A 35 , Tumas V 62 , Valente EM 63 , van de Warrenburg B 64 , Williams-Gray CH 11 , Wu RM 50 , Zhang B 65 , Zimprich A 66 , Solle J 67 , Padmanabhan S 67 , Klein C 1

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 Laboratório de Genética, Hospital Universitario Central de Asturias, Oviedo, Asturias, Spain
  • 7 Universidad de la Republica Uruguay, Montevideo, Uruguay
  • 8 Institute of Biomedical Research and Innovation, National Research Council, Cosenza, Italy
  • 9 Department of Neurology, Hadassah Medical Center and the Hebrew University, Jerusalem, Israel
  • 10 Division of Molecular Biology and Human Genetics, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa
  • 11 Department of Clinical Neurosciences, University of Cambridge, Cambridge, United Kingdom
  • 12 DST/NWU Preclinical Drug Development Platform, North-West University, Potchefstroom, North-West, South Africa
  • 13 Suna and Inan Kiraç Foundation, Neurodegeneration Research Laboratory, KUTTAM, School of Medicine, Koç University, Istanbul, Turkey
  • 14 Department of Clinical Genetics, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands
  • 15 Department of Neurology, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
  • 16 Department of Neurology, Milan Center for Neuroscience, University of Milano-Bicocca/San Gerardo Hospital, Monza, Monza Brianza, Italy
  • 17 Department of Neurodegenerative Diseases, University of Tuebingen, Tuebingen, Baden Wuerttemberg, Germany
  • 18 Department of Neuroscience, Karolinska Institutet, Stockholm, Sweden
  • 19 South African Medical Research Council/Stellenbosch University Genomics of Brain Disorders Research Unit, Stellenbosch University, Cape Town, South Africa
  • 20 Department of Neurology, Biomedical Research Institute IIB-Sant Pau, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
  • 21 Neurogenetics Research Center, Instituto Nacional de Ciencias Neurologicas, Lima, Peru
  • 22 Centro de Estudos Egas Moniz, Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal
  • 23 Paris Brain Institute-ICM, Inserm, CNRS, Assistance Publique Hôpitaux de Paris, Pitié-Salpêtrière Hospital, Department of Neurology, Sorbonne University, Paris, France
  • 24 Department of Neurology, Antwerp University Hospital, Edegem, Belgium
  • 25 Department of Neurology, Hospital de Santo António-Centro Hospitalar Universitário do Porto, Porto, Portugal
  • 26 Centre for Genetic Disorders, Institute of Science, Banaras Hindu University, Varanasi, Uttar Pradesh, India
  • 27 Hospital Israelita Albert Einstein, São Paulo, Brazil
  • 28 Department of Neurosciences and Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy
  • 29 Laboratory of Neurobiology, Department of Neurology, Poznan University of Medical Sciences, Poznan, Poland
  • 30 Department of Neurology, School of Medicine, Koç University, Istanbul, Turkey
  • 31 IRCCS Neuromed, Localita' Camerelle, Pozzilli, Isernia, Italy
  • 32 Translational Neurosciences, Born Bunge Institute, Faculty of Medicine and Health Sciences, University of Antwerp, Wilrijk, Antwerp, Belgium
  • 33 Movement Disorders, Department of Neurology, Instituto de Neurosciencias Buenos Aires, Buenos Aires, Argentina
  • 34 Department of Neurology, University of Health Sciences, Şişli Hamidiye Etfal Training and Research Hospital, İstanbul, Turkey
  • 35 Neurological Institute, Tel-Aviv Medical Center, Tel-Aviv, Israel; Sackler School of Medicine, Sagol School of Neuroscience, Tel-Aviv University, Tel-Aviv, Israel
  • 36 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
  • 37 Department of Neurology, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey
  • 38 Department of Neurology, Juntendo University School of Medicine, Bunkyo, Tokyo, Japan
  • 39 Mongi Ben Hmida National Institute of Neurology, Tunis, Tunisia
  • 40 Institute of Genetics and Biotechnology, Faculty of Biology, University of Warsaw, Warsaw, Poland
  • 41 Department of Neurogenetics, Research Center of Neurology, Moscow, Russia
  • 42 Parkinson's Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas, United States of America
  • 43 Neurocenter, Turku University Hospital, Turku, Finland
  • 44 Department of Neurology, University of Szeged, Szeged, Hungary
  • 45 Department for Neurodegeneration, Clinic for Neurology UCCS, Medical Faculty, University of Belgrade, Belgrade, Serbia
  • 46 Department of Neurology, Faculty of Health Science, Medical University in Warsaw, Warsaw, Poland
  • 47 Movement Disorder and Neuromodulation Unit, Charité, Department of Neurology, Campus Mitte, Universitätsmedizin Berlin, Berlin, Germany
  • 48 Edmond J. Safra Program in Parkinson's Disease, Division of Neurology, Department of Medicine, Toronto Western Hospital, University of Toronto, Toronto, Ontario, Canada
  • 49 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
  • 50 Department of Neurology, National Taiwan University Hospital, National Taiwan University College of Medicine, Taipei, Taiwan
  • 51 Griffith Institute for Drug Discovery (GRIDD), School of Environment and Science, Griffith University, Brisbane, Queensland, Australia
  • 52 Pontificia Universidad Católica Argentina (UCA), Buenos Aires, Argentina
  • 53 Department of Genetics, Institute of Biology Roberto Alcantara Gomes, State University of Rio de Janeiro, Rio de Janeiro, Brazil
  • 54 Division of Neurology, Department of Medicine, Ramathibodi Hospital, Mahidol University, Rajthevi, Bangkok, Thailand
  • 55 Department of Neurology, Lund University, Lund, Sweden
  • 56 Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto, Toronto, ON, Canada
  • 57 Medical Research Council Protein Phosphorylation and Ubiquitylation Unit, University of Dundee, Dundee, United Kingdom
  • 58 Centre of Health Science, University of the Faroe Islands, Tórshavn, Faroe Islands
  • 59 Pavol Jozef Šafárik University in Košice, Košice, Slovakia
  • 60 Neurology Service, State University of Rio de Janeiro, Rio de Janeiro, Rio de Janeiro, Brazil
  • 61 Department of Medicine, Medical Genetics and Pediatrics, University of Alberta, Edmonton, Alberta, Canada
  • 62 Behavioral and Movement Disorders Section, Ribeirão Preto Medical School, University of São Paulo, São Paulo, Brazil
  • 63 Department of Molecular Medicine, University of Pavia, Pavia, Italy
  • 64 Department of Neurology, Donders Institute for Brain, Cognition, and Behavior, Radboud University Medical Centre, Nijmegen, The Netherlands
  • 65 Department of Neurology, Second Affiliated Hospital, College of Medicine, Zhejiang University, Hangzhou, Zhejiang, China
  • 66 Department of Neurology, Medical University, Vienna, Austria
  • 67 The Michael J. Fox Foundation for Parkinson's Research, New York, NY, United States of America
PLoS One, 2023;18(10):e0292180.
PMID: 37788254 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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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