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

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...

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Autores principales: Eva‐Juliane Vollstedt, Harutyun Madoev, Anna Aasly, Azlina Ahmad‐Annuar, Bashayer Al‐Mubarak, Roy N. Alcalay, Victoria Álvarez, Ignacio Amorín, Grazia Annesi, David Arkadir, Soraya Bardien, Roger A. Barker, Melinda Barkhuizen, A. Nazlı Başak, Vincenzo Bonifati, Agnita J.W. Boon, Laura Brighina, Kathrin Brockmann, Andrea Carmine Belin, Jonathan Carr, Jordi Clarimón, Mario Cornejo‐Olivas, Leonor Correia Guedes, Jean‐Christophe Corvol, David Crosiers, Joana Damásio, Parimal Das, Patrícia de Carvalho Aguiar, Anna De Rosa, Jolanta Dorszewska, Sibel Ertan, Rosangela Ferese, Joaquim J. Ferreira, Emilia Gatto, Gençer Genç, Nir Giladi, Pilar Gómez‐Garre, Haşmet Hanağası, Nobutaka Hattori, Fayçal Hentati, Dorota Hoffman‐Zacharska, С. Н. Иллариошкин, Joseph Jankovic, Silvia Jesús, Valtteri Kaasinen, Anneke J.A. Kievit, Péter Klivènyi, Vladimir Kostić, Dariusz Koziorowski, Andrea A. Kühn, Anthony E. Lang, Shen‐Yang Lim, Chin‐Hsien Lin, Katja Lohmann, Vladana Marković, Mika H. Martikainen, George D. Mellick, Marcelo Merello, Łukasz Milanowski, Pablo Mir, Özgür Öztop Çakmak, Márcia Mattos Gonçalves Pimentel, Teeratorn Pulkes, Andreas Puschmann, Ekaterina Rogaeva, Esther Sammler, Maria Skaalum Petersen, Matěj Škorvánek, Mariana Spitz, Oksana Suchowersky, Ai Huey Tan, Pichet Termsarasab, Avner Thaler, Vítor Tumas, Enza Maria Valente, Bart P.C. van de Warrenburg, Caroline H. Williams‐Gray, Ruey-Mei Wu, Baorong Zhang, Alexander Zimprich, J Solle, Shalini Padmanabhan, Christine Klein
Formato: Otro
Lenguaje:inglés
Publicado: 2023
Materias:
Resource (disambiguation)
Pace
Biorepository
Disease
Medicine
Clinical trial
White paper
Inclusion (mineral)
Bioinformatics
Biobank
Psychology
Computer science
Political science
Geography
Biology
Pathology
Social psychology
Computer network
Geodesy
Law
Humans
Palliative Care
Parkinson Disease genetics
Parkinson Disease therapy
Life Sciences Biochemistry, Genetics and Molecular Biology Molecular Biology CRISPR and Genetic Engineering
Life Sciences Neuroscience Cognitive Neuroscience Autism Spectrum Disorder Research
Health Sciences Medicine Neurology Parkinson's Disease Mechanisms and Treatments
Acceso en línea:Ver en el sistema de origen
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Sumario: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.

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