Universidad Peruana Cayetano Heredia

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 Carmine Belin, Andrea
dc.contributor.author Carr, Jonathan
dc.contributor.author Clarimon, Jordi
dc.contributor.author Cornejo Olivas, Mario Reynaldo
dc.contributor.author Correia Guedes, Leonor
dc.contributor.author Corvol, Jean-Christophe
dc.contributor.author Crosiers, David
dc.contributor.author Damásio, Joana
dc.contributor.author Das, Parimal
dc.contributor.author de Carvalho Aguiar, Patricia
dc.contributor.author De Rosa, Anna
dc.contributor.author Dorszewska, Jolanta
dc.contributor.author Ertan, Sibel
dc.contributor.author Ferese, Rosangela
dc.contributor.author Ferreira, Joaquim
dc.contributor.author Gatto, Emilia
dc.contributor.author Genç, Gençer
dc.contributor.author Giladi, Nir
dc.contributor.author Gómez-Garre, Pilar
dc.contributor.author Hanagasi, Hasmet
dc.contributor.author Hattori, Nobutaka
dc.contributor.author Hentati, Faycal
dc.contributor.author Hoffman-Zacharska, Dorota
dc.contributor.author Illarioshkin, Sergey N.
dc.contributor.author Jankovic, Joseph
dc.contributor.author Jesús, Silvia
dc.contributor.author Kaasinen, Valtteri
dc.contributor.author Kievit, Anneke
dc.contributor.author Klivenyi, Peter
dc.contributor.author Kostic, Vladimir
dc.contributor.author Koziorowski, Dariusz
dc.contributor.author Kühn, Andrea A.
dc.contributor.author Lang, Anthony E.
dc.contributor.author Lim, Shen-Yang
dc.contributor.author Lin, Chin-Hsien
dc.contributor.author Lohmann, Katja
dc.contributor.author Markovic, Vladana
dc.contributor.author Martikainen, Mika Henrik
dc.contributor.author Mellick, George
dc.contributor.author Merello, Marcelo
dc.contributor.author Milanowski, Lukasz
dc.contributor.author Mir, Pablo
dc.contributor.author Öztop-Çakmak, Özgür
dc.contributor.author Pimentel, Márcia Mattos Gonçalves
dc.contributor.author Pulkes, Teeratorn
dc.contributor.author Puschmann, Andreas
dc.contributor.author Rogaeva, Ekaterina
dc.contributor.author Sammler, Esther M.
dc.contributor.author Skaalum Petersen, Maria
dc.contributor.author Skorvanek, Matej
dc.contributor.author Spitz, Mariana
dc.contributor.author Suchowersky, Oksana
dc.contributor.author Tan, Ai Huey
dc.contributor.author Termsarasab, Pichet
dc.contributor.author Thaler, Avner
dc.contributor.author Tumas, Vitor
dc.contributor.author Valente, Enza Maria
dc.contributor.author van de Warrenburg, Bart
dc.contributor.author Williams-Gray, Caroline H.
dc.contributor.author Wu, Ruey-Mei
dc.contributor.author Zhang, Baorong
dc.contributor.author Zimprich, Alexander
dc.contributor.author Solle, Justin
dc.contributor.author Padmanabhan, Shalini
dc.contributor.author Klein, Christine
dc.date.accessioned 2023-12-05T17:48:00Z
dc.date.available 2023-12-05T17:48:00Z
dc.date.issued 2023
dc.identifier.uri https://hdl.handle.net/20.500.12866/14629
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. en_US
dc.language.iso eng
dc.publisher PLoS
dc.relation.ispartofseries PLoS One
dc.rights info:eu-repo/semantics/restrictedAccess
dc.rights.uri https://creativecommons.org/licenses/by-nc-nd/4.0/deed.es
dc.subject Parkinson disease en_US
dc.subject Genetics of disease en_US
dc.subject Clinical genetics en_US
dc.subject Induced pluripotent stem cells en_US
dc.subject Health care facilities en_US
dc.subject Cerebrospinal fluid en_US
dc.subject Biomaterials en_US
dc.subject Surveys en_US
dc.subject.mesh Enfermedad de Parkinson
dc.subject.mesh Genética
dc.subject.mesh Células Madre Pluripotentes Inducidas
dc.subject.mesh Instalaciones para Atención de Salud, Recursos Humanos y Servicios
dc.subject.mesh Líquido Cefalorraquídeo
dc.subject.mesh Materiales Biocompatibles
dc.subject.mesh Encuestas y Cuestionarios
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 en_US
dc.type info:eu-repo/semantics/article
dc.identifier.doi https://doi.org/10.1371/journal.pone.0292180
dc.relation.issn 1932-6203


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