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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| Formato: | Otro |
| Lenguaje: | inglés |
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2023
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| author | 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 |
| author_browse | A. Nazlı Başak Agnita J.W. Boon Ai Huey Tan Alexander Zimprich Andrea A. Kühn Andrea Carmine Belin Andreas Puschmann Anna Aasly Anna De Rosa Anneke J.A. Kievit Anthony E. Lang Avner Thaler Azlina Ahmad‐Annuar Baorong Zhang Bart P.C. van de Warrenburg Bashayer Al‐Mubarak Caroline H. Williams‐Gray Chin‐Hsien Lin Christine Klein Dariusz Koziorowski David Arkadir David Crosiers Dorota Hoffman‐Zacharska Ekaterina Rogaeva Emilia Gatto Enza Maria Valente Esther Sammler Eva‐Juliane Vollstedt Fayçal Hentati Gençer Genç George D. Mellick Grazia Annesi Harutyun Madoev Haşmet Hanağası Ignacio Amorín J Solle Jean‐Christophe Corvol Joana Damásio Joaquim J. Ferreira Jolanta Dorszewska Jonathan Carr Jordi Clarimón Joseph Jankovic Kathrin Brockmann Katja Lohmann Laura Brighina Leonor Correia Guedes Marcelo Merello Maria Skaalum Petersen Mariana Spitz Mario Cornejo‐Olivas Matěj Škorvánek Melinda Barkhuizen Mika H. Martikainen Márcia Mattos Gonçalves Pimentel Nir Giladi Nobutaka Hattori Oksana Suchowersky Pablo Mir Parimal Das Patrícia de Carvalho Aguiar Pichet Termsarasab Pilar Gómez‐Garre Péter Klivènyi Roger A. Barker Rosangela Ferese Roy N. Alcalay Ruey-Mei Wu Shalini Padmanabhan Shen‐Yang Lim Sibel Ertan Silvia Jesús Soraya Bardien Teeratorn Pulkes Valtteri Kaasinen Victoria Álvarez Vincenzo Bonifati Vladana Marković Vladimir Kostić Vítor Tumas Özgür Öztop Çakmak Łukasz Milanowski С. Н. Иллариошкин |
| author_facet | 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 |
| author_sort | Eva‐Juliane Vollstedt |
| collection | Producción científica |
| description | 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. |
| format | Other |
| id | oai:cris.upeu.edu.pe:20.500.15037/1588 |
| institution | UPeU |
| language | English |
| publishDate | 2023 |
| publishDateRange | 2023 |
| publishDateSort | 2023 |
| record_format | dspace |
| spelling | oai:cris.upeu.edu.pe:20.500.15037/15882026-10-30T16:16:12ZEstablishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease ProjectEva‐Juliane VollstedtHarutyun MadoevAnna AaslyAzlina Ahmad‐AnnuarBashayer Al‐MubarakRoy N. AlcalayVictoria ÁlvarezIgnacio AmorínGrazia AnnesiDavid ArkadirSoraya BardienRoger A. BarkerMelinda BarkhuizenA. Nazlı BaşakVincenzo BonifatiAgnita J.W. BoonLaura BrighinaKathrin BrockmannAndrea Carmine BelinJonathan CarrJordi ClarimónMario Cornejo‐OlivasLeonor Correia GuedesJean‐Christophe CorvolDavid CrosiersJoana DamásioParimal DasPatrícia de Carvalho AguiarAnna De RosaJolanta DorszewskaSibel ErtanRosangela FereseJoaquim J. FerreiraEmilia GattoGençer GençNir GiladiPilar Gómez‐GarreHaşmet HanağasıNobutaka HattoriFayçal HentatiDorota Hoffman‐ZacharskaС. Н. ИллариошкинJoseph JankovicSilvia JesúsValtteri KaasinenAnneke J.A. KievitPéter KlivènyiVladimir KostićDariusz KoziorowskiAndrea A. KühnAnthony E. LangShen‐Yang LimChin‐Hsien LinKatja LohmannVladana MarkovićMika H. MartikainenGeorge D. MellickMarcelo MerelloŁukasz MilanowskiPablo MirÖzgür Öztop ÇakmakMárcia Mattos Gonçalves PimentelTeeratorn PulkesAndreas PuschmannEkaterina RogaevaEsther SammlerMaria Skaalum PetersenMatěj ŠkorvánekMariana SpitzOksana SuchowerskyAi Huey TanPichet TermsarasabAvner ThalerVítor TumasEnza Maria ValenteBart P.C. van de WarrenburgCaroline H. Williams‐GrayRuey-Mei WuBaorong ZhangAlexander ZimprichJ SolleShalini PadmanabhanChristine KleinResource (disambiguation)PaceBiorepositoryDiseaseMedicineClinical trialWhite paperInclusion (mineral)BioinformaticsBiobankPsychologyComputer sciencePolitical scienceGeographyBiologyPathologySocial psychologyComputer networkGeodesyLawResource (disambiguation)PaceBiorepositoryDiseaseMedicineClinical trialWhite paperInclusion (mineral)BioinformaticsBiobankPsychologyComputer sciencePolitical scienceGeographyBiologyPathologyHumansHumansHumansHumansPalliative CarePalliative CarePalliative CarePalliative CareParkinson Disease geneticsParkinson Disease geneticsParkinson Disease geneticsParkinson Disease geneticsParkinson Disease therapyParkinson Disease therapyParkinson Disease therapyParkinson Disease therapyLife Sciences Biochemistry, Genetics and Molecular Biology Molecular Biology CRISPR and Genetic EngineeringLife Sciences Neuroscience Cognitive Neuroscience Autism Spectrum Disorder ResearchHealth Sciences Medicine Neurology Parkinson's Disease Mechanisms and TreatmentsParkinson'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.Otherhttps://pubmed.ncbi.nlm.nih.gov/37788254https://doi.org/10.1371/journal.pone.029218010.1371/journal.pone.0292180https://hdl.handle.net/20.500.15037/1588W4387300070enPLoS ONE1932-62032023-10-032026-06-13T14:15:03Z2026-06-13T14:15:03Z |
| spellingShingle | 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 Resource (disambiguation) Pace Biorepository Disease Medicine Clinical trial White paper Inclusion (mineral) Bioinformatics Biobank Psychology Computer science Political science Geography Biology Pathology Humans Humans Humans Humans Palliative Care Palliative Care Palliative Care Palliative Care Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease therapy Parkinson Disease therapy Parkinson Disease therapy 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 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 Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project |
| title | Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project |
| title_full | Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project |
| title_fullStr | Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project |
| title_full_unstemmed | Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project |
| title_short | Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project |
| title_sort | establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations experience from the mjff global genetic parkinson s disease project |
| topic | 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 Resource (disambiguation) Pace Biorepository Disease Medicine Clinical trial White paper Inclusion (mineral) Bioinformatics Biobank Psychology Computer science Political science Geography Biology Pathology Humans Humans Humans Humans Palliative Care Palliative Care Palliative Care Palliative Care Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease therapy Parkinson Disease therapy Parkinson Disease therapy 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 |
| topic_facet | 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 Resource (disambiguation) Pace Biorepository Disease Medicine Clinical trial White paper Inclusion (mineral) Bioinformatics Biobank Psychology Computer science Political science Geography Biology Pathology Humans Humans Humans Humans Palliative Care Palliative Care Palliative Care Palliative Care Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease genetics Parkinson Disease therapy Parkinson Disease therapy Parkinson Disease therapy 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 |
| url | https://pubmed.ncbi.nlm.nih.gov/37788254 https://doi.org/10.1371/journal.pone.0292180 https://hdl.handle.net/20.500.15037/1588 |
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establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT carolinehwilliamsgray establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT rueymeiwu establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT baorongzhang establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT alexanderzimprich establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT jsolle establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT shalinipadmanabhan establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject AT christineklein establishinganonlineresourcetofacilitateglobalcollaborationandinclusionofunderrepresentedpopulationsexperiencefromthemjffglobalgeneticparkinsonsdiseaseproject |