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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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dc.contributor.author Vollstedt, Eva-Juliane
dc.contributor.author Madoev, Harutyun
dc.contributor.author Aasly, Anna
dc.contributor.author Ahmad-Annuar, Azlina
dc.contributor.author Al-Mubarak, Bashayer
dc.contributor.author Alcalay, Roy N.
dc.contributor.author Alvarez, Victoria
dc.contributor.author Amorin, Ignacio
dc.contributor.author Annesi, Grazia
dc.contributor.author Arkadir, David
dc.contributor.author Bardien, Soraya
dc.contributor.author Barker, Roger A.
dc.contributor.author Barkhuizen, Melinda
dc.contributor.author Basak, A. Nazli
dc.contributor.author Bonifati, Vincenzo
dc.contributor.author Boon, Agnita
dc.contributor.author Brighina, Laura
dc.contributor.author Brockmann, Kathrin
dc.contributor.author Belin, Andrea Carmine
dc.contributor.author Merello, Marcelo
dc.date.accessioned 2024-03-07T14:36:50Z
dc.date.available 2024-03-07T14:36:50Z
dc.date.issued 2023-10-03
dc.identifier.citation Vollstedt EJ, Madoev H, Aasly A, Ahmad-Annuar A, Al-Mubarak B, Alcalay RN, et al. 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. 3 de octubre de 2023;18(10):e0292180. es_ES
dc.identifier.uri https://doi.org/10.1371/journal.pone.0292180
dc.identifier.uri https://repositorio.fleni.org.ar/xmlui/handle/123456789/1037
dc.description.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. es_ES
dc.language.iso eng es_ES
dc.publisher Public Library of Science es_ES
dc.rights info:eu-repo/semantics/openAccess
dc.subject Palliative Care es_ES
dc.subject Cuidados Paliativos es_ES
dc.subject Parkinson Disease es_ES
dc.subject Enfermedad de Parkinson es_ES
dc.title Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson's Disease Project es_ES
dc.type info:eu-repo/semantics/article es_ES
dc.type info:eu-repo/semantics/publishedVersion
dc.description.fil Fil: Merello, Marcelo. Fleni. Departamento de Neurología. Servicio de Movimientos Anormales; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina.
dc.relation.ispartofVOLUME 18
dc.relation.ispartofNUMBER 10
dc.relation.ispartofPAGINATION e0292180
dc.relation.ispartofCOUNTRY Estados Unidos
dc.relation.ispartofCITY San Francisco
dc.relation.ispartofTITLE PloS one
dc.relation.ispartofISSN 1932-6203
dc.type.snrd info:ar-repo/semantics/artículo es_ES


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