Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson's Disease Project
Issued Date
2023-01-01
Resource Type
eISSN
19326203
Scopus ID
2-s2.0-85172999938
Pubmed ID
37788254
Journal Title
PloS one
Volume
18
Issue
10
Rights Holder(s)
SCOPUS
Bibliographic Citation
PloS one Vol.18 No.10 (2023) , e0292180
Suggested Citation
Vollstedt E.J., Madoev H., Aasly A., Ahmad-Annuar A., Al-Mubarak B., Alcalay R.N., Alvarez V., Amorin I., Annesi G., Arkadir D., Bardien S., Barker R.A., Barkhuizen M., Basak A.N., Bonifati V., Boon A., Brighina L., Brockmann K., Belin A.C., Carr J., Clarimon J., Cornejo-Olivas M., Guedes L.C., Corvol J.C., Crosiers D., Damásio J., Das P., de Carvalho Aguiar P., De Rosa A., Dorszewska J., Ertan S., Ferese R., Ferreira J., Gatto E., Genç G., Giladi N., Gómez-Garre P., Hanagasi H., Hattori N., Hentati F., Hoffman-Zacharska D., Illarioshkin S.N., Jankovic J., Jesús S., Kaasinen V., Kievit A., Klivenyi P., Kostic V., Koziorowski D., Kühn A.A., Lang A.E., Lim S.Y., Lin C.H., Lohmann K., Markovic V., Martikainen M.H., Mellick G., Merello M., Milanowski L., Mir P., Öztop-Çakmak Ö., Pimentel M.M.G., Pulkes T., Puschmann A., Rogaeva E., Sammler E.M., Petersen M.S., Skorvanek M., Spitz M., Suchowersky O., Tan A.H., Termsarasab P., Thaler A., Tumas V., Valente E.M., van de Warrenburg B., Williams-Gray C.H., Wu R.M., Zhang B., Zimprich A., Solle J., Padmanabhan S., Klein C. 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 Vol.18 No.10 (2023) , e0292180. doi:10.1371/journal.pone.0292180 Retrieved from: https://repository.li.mahidol.ac.th/handle/20.500.14594/90677
Title
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)
Vollstedt E.J.
Madoev H.
Aasly A.
Ahmad-Annuar A.
Al-Mubarak B.
Alcalay R.N.
Alvarez V.
Amorin I.
Annesi G.
Arkadir D.
Bardien S.
Barker R.A.
Barkhuizen M.
Basak A.N.
Bonifati V.
Boon A.
Brighina L.
Brockmann K.
Belin A.C.
Carr J.
Clarimon J.
Cornejo-Olivas M.
Guedes L.C.
Corvol J.C.
Crosiers D.
Damásio J.
Das P.
de Carvalho Aguiar P.
De Rosa A.
Dorszewska J.
Ertan S.
Ferese R.
Ferreira J.
Gatto E.
Genç G.
Giladi N.
Gómez-Garre P.
Hanagasi H.
Hattori N.
Hentati F.
Hoffman-Zacharska D.
Illarioshkin S.N.
Jankovic J.
Jesús S.
Kaasinen V.
Kievit A.
Klivenyi P.
Kostic V.
Koziorowski D.
Kühn A.A.
Lang A.E.
Lim S.Y.
Lin C.H.
Lohmann K.
Markovic V.
Martikainen M.H.
Mellick G.
Merello M.
Milanowski L.
Mir P.
Öztop-Çakmak Ö.
Pimentel M.M.G.
Pulkes T.
Puschmann A.
Rogaeva E.
Sammler E.M.
Petersen M.S.
Skorvanek M.
Spitz M.
Suchowersky O.
Tan A.H.
Termsarasab P.
Thaler A.
Tumas V.
Valente E.M.
van de Warrenburg B.
Williams-Gray C.H.
Wu R.M.
Zhang B.
Zimprich A.
Solle J.
Padmanabhan S.
Klein C.
Madoev H.
Aasly A.
Ahmad-Annuar A.
Al-Mubarak B.
Alcalay R.N.
Alvarez V.
Amorin I.
Annesi G.
Arkadir D.
Bardien S.
Barker R.A.
Barkhuizen M.
Basak A.N.
Bonifati V.
Boon A.
Brighina L.
Brockmann K.
Belin A.C.
Carr J.
Clarimon J.
Cornejo-Olivas M.
Guedes L.C.
Corvol J.C.
Crosiers D.
Damásio J.
Das P.
de Carvalho Aguiar P.
De Rosa A.
Dorszewska J.
Ertan S.
Ferese R.
Ferreira J.
Gatto E.
Genç G.
Giladi N.
Gómez-Garre P.
Hanagasi H.
Hattori N.
Hentati F.
Hoffman-Zacharska D.
Illarioshkin S.N.
Jankovic J.
Jesús S.
Kaasinen V.
Kievit A.
Klivenyi P.
Kostic V.
Koziorowski D.
Kühn A.A.
Lang A.E.
Lim S.Y.
Lin C.H.
Lohmann K.
Markovic V.
Martikainen M.H.
Mellick G.
Merello M.
Milanowski L.
Mir P.
Öztop-Çakmak Ö.
Pimentel M.M.G.
Pulkes T.
Puschmann A.
Rogaeva E.
Sammler E.M.
Petersen M.S.
Skorvanek M.
Spitz M.
Suchowersky O.
Tan A.H.
Termsarasab P.
Thaler A.
Tumas V.
Valente E.M.
van de Warrenburg B.
Williams-Gray C.H.
Wu R.M.
Zhang B.
Zimprich A.
Solle J.
Padmanabhan S.
Klein C.
Author's Affiliation
Instituto de Investigación Sanitaria del Principado de Asturias
Ramathibodi Hospital
University of Health Sciences
Tanz Centre for Research in Neurodegenerative Diseases
University of Dundee School of Medicine
Department of Clinical Neurosciences
The Second Affiliated Hospital Zhejiang University School of Medicine
The Michael J. Fox Foundation for Parkinson‘s Research
Universidade de Lisboa
Louis Pasteur University Hospital
Research Center of Neurology
Deutsches Zentrum für Neurodegenerative Erkrankungen
Donders Institute for Brain, Cognition and Behaviour
Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas
IRCCS Fondazione Mondino
National Taiwan University Hospital
Faroese Hospital System
University of the Faroe Islands
Universidad de la Republica
Instituto Nacional de Ciencias Neurologicas
Universidad Peruana Cayetano Heredia
Instituut Born-Bunge
Poznan University of Medical Sciences
Medical University of Warsaw
Belgrade University School of Medicine
Université de Tunis El Manar, Institut National de Neurologie
Hospital Universitario Virgen del Rocío
Griffith University
Pontificia Universidad Catolica Argentina
Erasmus MC
Pavol Jozef Šafárik University in Košice
Columbia University
North-West University
Centro de Estudos Egas Moniz
Lunds Universitet
Universiti Malaya
Szegedi Tudományegyetem (SZTE)
Charité – Universitätsmedizin Berlin
Turun Yliopistollinen Keskussairaala
Fundacion Para La Lucha Contra Las Enfermedades Neurologicas de La Infancia
Istituto Neurologico Mediterraneo Neuromed, Pozzilli
Instituto de Medicina Molecular João Lobo Antunes
Consiglio Nazionale delle Ricerche
Vlaams Instituut voor Biotechnologie
University of Alberta, Faculty of Medicine and Dentistry
Università degli Studi di Napoli Federico II
Eberhard Karls Universität Tübingen
Hospital Universitario Central de Asturias
University of Toronto
King Faisal Specialist Hospital and Research Centre
Hospital Israelita Albert Einstein
Hôpital Universitaire Pitié Salpêtrière
Università degli Studi di Pavia
Universidade Federal de São Paulo
Skånes Universitetssjukhus
University of Warsaw
Universitair Ziekenhuis Antwerpen
Norges Teknisk-Naturvitenskapelige Universitet
Universität zu Lübeck
İstanbul Tıp Fakültesi
Karolinska Institutet
Università degli Studi di Milano-Bicocca
Lääketieteellinen Tiedekunta
Medizinische Universität Wien
Juntendo University School of Medicine
Hospital de La Santa Creu I Sant Pau
University of Dundee
Tel Aviv Sourasky Medical Center
Banaras Hindu University
Universidade de São Paulo
Hebrew University of Jerusalem
Koç Üniversitesi
Tel Aviv University
Universidade do Estado do Rio de Janeiro
Consejo Nacional de Investigaciones Científicas y Técnicas
Instituto de Biologia Molecular e Celular
Stellenbosch University, Faculty of Medicine and Health Sciences
Baylor College of Medicine
Stellenbosch University
Hospital de Santo António
Satasairaala Hospital
Movement Disorders
Ramathibodi Hospital
University of Health Sciences
Tanz Centre for Research in Neurodegenerative Diseases
University of Dundee School of Medicine
Department of Clinical Neurosciences
The Second Affiliated Hospital Zhejiang University School of Medicine
The Michael J. Fox Foundation for Parkinson‘s Research
Universidade de Lisboa
Louis Pasteur University Hospital
Research Center of Neurology
Deutsches Zentrum für Neurodegenerative Erkrankungen
Donders Institute for Brain, Cognition and Behaviour
Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas
IRCCS Fondazione Mondino
National Taiwan University Hospital
Faroese Hospital System
University of the Faroe Islands
Universidad de la Republica
Instituto Nacional de Ciencias Neurologicas
Universidad Peruana Cayetano Heredia
Instituut Born-Bunge
Poznan University of Medical Sciences
Medical University of Warsaw
Belgrade University School of Medicine
Université de Tunis El Manar, Institut National de Neurologie
Hospital Universitario Virgen del Rocío
Griffith University
Pontificia Universidad Catolica Argentina
Erasmus MC
Pavol Jozef Šafárik University in Košice
Columbia University
North-West University
Centro de Estudos Egas Moniz
Lunds Universitet
Universiti Malaya
Szegedi Tudományegyetem (SZTE)
Charité – Universitätsmedizin Berlin
Turun Yliopistollinen Keskussairaala
Fundacion Para La Lucha Contra Las Enfermedades Neurologicas de La Infancia
Istituto Neurologico Mediterraneo Neuromed, Pozzilli
Instituto de Medicina Molecular João Lobo Antunes
Consiglio Nazionale delle Ricerche
Vlaams Instituut voor Biotechnologie
University of Alberta, Faculty of Medicine and Dentistry
Università degli Studi di Napoli Federico II
Eberhard Karls Universität Tübingen
Hospital Universitario Central de Asturias
University of Toronto
King Faisal Specialist Hospital and Research Centre
Hospital Israelita Albert Einstein
Hôpital Universitaire Pitié Salpêtrière
Università degli Studi di Pavia
Universidade Federal de São Paulo
Skånes Universitetssjukhus
University of Warsaw
Universitair Ziekenhuis Antwerpen
Norges Teknisk-Naturvitenskapelige Universitet
Universität zu Lübeck
İstanbul Tıp Fakültesi
Karolinska Institutet
Università degli Studi di Milano-Bicocca
Lääketieteellinen Tiedekunta
Medizinische Universität Wien
Juntendo University School of Medicine
Hospital de La Santa Creu I Sant Pau
University of Dundee
Tel Aviv Sourasky Medical Center
Banaras Hindu University
Universidade de São Paulo
Hebrew University of Jerusalem
Koç Üniversitesi
Tel Aviv University
Universidade do Estado do Rio de Janeiro
Consejo Nacional de Investigaciones Científicas y Técnicas
Instituto de Biologia Molecular e Celular
Stellenbosch University, Faculty of Medicine and Health Sciences
Baylor College of Medicine
Stellenbosch University
Hospital de Santo António
Satasairaala Hospital
Movement Disorders
Other Contributor(s)
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.