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

Eva Juliane Vollstedt; Harutyun Madoev; Anna Aasly; Azlina Ahmad-Annuar; Bashayer Al-Mubarak; Roy N. Alcalay; Victoria Alvarez; Ignacio Amorin; Grazia Annesi; David Arkadir; Soraya Bardien; Roger A. Barker; Melinda Barkhuizen; A. Nazli Basak; Vincenzo Bonifati; Agnita Boon; Laura Brighina; Kathrin Brockmann; Andrea Carmine Belin; Jonathan Carr; Jordi Clarimon; Mario Cornejo-Olivas; Leonor Correia Guedes; Jean Christophe Corvol; David Crosiers; Joana Damásio; Parimal Das; Patricia de Carvalho Aguiar; Anna De Rosa; Jolanta Dorszewska; Sibel Ertan; Rosangela Ferese; Joaquim Ferreira; Emilia Gatto; Gençer Genç; Nir Giladi; Pilar Gómez-Garre; Hasmet Hanagasi; Nobutaka Hattori; Faycal Hentati; Dorota Hoffman-Zacharska; Sergey N. Illarioshkin; Joseph Jankovic; Silvia Jesús; Valtteri Kaasinen; Anneke Kievit; Peter Klivenyi; Vladimir Kostic; Dariusz Koziorowski; Andrea A. Kühn; Anthony E. Lang; Shen Yang Lim; Chin Hsien Lin; Katja Lohmann; Vladana Markovic; Mika Henrik Martikainen; George Mellick; Marcelo Merello; Lukasz Milanowski; Pablo Mir; Özgür Öztop-Çakmak; Márcia Mattos Gonçalves Pimentel; Teeratorn Pulkes; Andreas Puschmann; Ekaterina Rogaeva; Esther M. Sammler; Maria Skaalum Petersen; Matej Skorvanek; Mariana Spitz; Oksana Suchowersky; Ai Huey Tan; Pichet Termsarasab; Avner Thaler; Vitor Tumas; Enza Maria Valente; Bart van de Warrenburg; Caroline H. Williams-Gray; Ruey Mei Wu; Baorong Zhang; Alexander Zimprich; Justin Solle; Shalini Padmanabhan; Christine Klein

doi:10.1371/journal.pone.0292180

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

Eva Juliane Vollstedt, Harutyun Madoev, Anna Aasly, Azlina Ahmad-Annuar, Bashayer Al-Mubarak, Roy N. Alcalay, Victoria Alvarez, Ignacio Amorin, Grazia Annesi, David Arkadir, Soraya Bardien, Roger A. Barker, Melinda Barkhuizen, A. Nazli Basak, Vincenzo Bonifati, Agnita Boon, Laura Brighina, Kathrin Brockmann, Andrea Carmine Belin, Jonathan CarrJordi Clarimon, Mario Cornejo-Olivas, Leonor Correia Guedes, Jean Christophe Corvol, David Crosiers, Joana Damásio, Parimal Das, Patricia de Carvalho Aguiar, Anna De Rosa, Jolanta Dorszewska, Sibel Ertan, Rosangela Ferese, Joaquim Ferreira, Emilia Gatto, Gençer Genç, Nir Giladi, Pilar Gómez-Garre, Hasmet Hanagasi, Nobutaka Hattori, Faycal Hentati, Dorota Hoffman-Zacharska, Sergey N. Illarioshkin, Joseph Jankovic, Silvia Jesús, Valtteri Kaasinen, Anneke Kievit, Peter Klivenyi, Vladimir Kostic, Dariusz Koziorowski, Andrea A. Kühn, Anthony E. Lang, Shen Yang Lim, Chin Hsien Lin, Katja Lohmann, Vladana Markovic, Mika Henrik Martikainen, George Mellick, Marcelo Merello, Lukasz Milanowski, Pablo Mir, Özgür Öztop-Çakmak, Márcia Mattos Gonçalves Pimentel, Teeratorn Pulkes, Andreas Puschmann, Ekaterina Rogaeva, Esther M. Sammler, Maria Skaalum Petersen, Matej Skorvanek, Mariana Spitz, Oksana Suchowersky, Ai Huey Tan, Pichet Termsarasab, Avner Thaler, Vitor Tumas, Enza Maria Valente, Bart van de Warrenburg, Caroline H. Williams-Gray, Ruey Mei Wu, Baorong Zhang, Alexander Zimprich, Justin Solle, Shalini Padmanabhan, Christine Klein^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Article number	e0292180
Journal	PLoS ONE
Volume	18
Issue number	10 October
DOIs	https://doi.org/10.1371/journal.pone.0292180
State	Published - Oct 2023

Funding

Funders	Funder number
Michael J. Fox Foundation for Parkinson's Research	15015.03
National Institute for Health and Care Research
NIHR Cambridge Biomedical Research Centre	BRC-1215-20014

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10.1371/journal.pone.0292180

Cite this

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., ... Klein, C. (2023). 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, 18(10 October), Article e0292180. https://doi.org/10.1371/journal.pone.0292180

@article{a27a6ef383664d089101714a92e6f133,

title = "Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson{\textquoteright}s Disease Project",

abstract = "Parkinson{\textquoteright}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{\textquoteright}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.",

author = "Vollstedt, {Eva Juliane} and Harutyun Madoev and Anna Aasly and Azlina Ahmad-Annuar and Bashayer Al-Mubarak and Alcalay, {Roy N.} and Victoria Alvarez and Ignacio Amorin and Grazia Annesi and David Arkadir and Soraya Bardien and Barker, {Roger A.} and Melinda Barkhuizen and Basak, {A. Nazli} and Vincenzo Bonifati and Agnita Boon and Laura Brighina and Kathrin Brockmann and Belin, {Andrea Carmine} and Jonathan Carr and Jordi Clarimon and Mario Cornejo-Olivas and Guedes, {Leonor Correia} and Corvol, {Jean Christophe} and David Crosiers and Joana Dam{\'a}sio and Parimal Das and {de Carvalho Aguiar}, Patricia and {De Rosa}, Anna and Jolanta Dorszewska and Sibel Ertan and Rosangela Ferese and Joaquim Ferreira and Emilia Gatto and Gen{\c c}er Gen{\c c} and Nir Giladi and Pilar G{\'o}mez-Garre and Hasmet Hanagasi and Nobutaka Hattori and Faycal Hentati and Dorota Hoffman-Zacharska and Illarioshkin, {Sergey N.} and Joseph Jankovic and Silvia Jes{\'u}s and Valtteri Kaasinen and Anneke Kievit and Peter Klivenyi and Vladimir Kostic and Dariusz Koziorowski and K{\"u}hn, {Andrea A.} and Lang, {Anthony E.} and Lim, {Shen Yang} and Lin, {Chin Hsien} and Katja Lohmann and Vladana Markovic and Martikainen, {Mika Henrik} and George Mellick and Marcelo Merello and Lukasz Milanowski and Pablo Mir and {\"O}zg{\"u}r {\"O}ztop-{\c C}akmak and Pimentel, {M{\'a}rcia Mattos Gon{\c c}alves} and Teeratorn Pulkes and Andreas Puschmann and Ekaterina Rogaeva and Sammler, {Esther M.} and Petersen, {Maria Skaalum} and Matej Skorvanek and Mariana Spitz and Oksana Suchowersky and Tan, {Ai Huey} and Pichet Termsarasab and Avner Thaler and Vitor Tumas and Valente, {Enza Maria} and {van de Warrenburg}, Bart and Williams-Gray, {Caroline H.} and Wu, {Ruey Mei} and Baorong Zhang and Alexander Zimprich and Justin Solle and Shalini Padmanabhan and Christine Klein",

note = "Publisher Copyright: Copyright: {\textcopyright} 2023 Vollstedt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.",

year = "2023",

month = oct,

doi = "10.1371/journal.pone.0292180",

language = "אנגלית",

volume = "18",

journal = "PLoS ONE",

issn = "1932-6203",

publisher = "Public Library of Science",

number = "10 October",

}

Vollstedt, EJ, Madoev, H, Aasly, A, Ahmad-Annuar, A, Al-Mubarak, B, Alcalay, RN, Alvarez, V, Amorin, I, Annesi, G, Arkadir, D, Bardien, S, Barker, RA, Barkhuizen, M, Basak, AN, Bonifati, V, Boon, A, Brighina, L, Brockmann, K, Belin, AC, Carr, J, Clarimon, J, Cornejo-Olivas, M, Guedes, LC, Corvol, JC, 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, SN, Jankovic, J, Jesús, S, Kaasinen, V, Kievit, A, Klivenyi, P, Kostic, V, Koziorowski, D, Kühn, AA, Lang, AE, Lim, SY, Lin, CH, Lohmann, K, Markovic, V, Martikainen, MH, Mellick, G, Merello, M, Milanowski, L, Mir, P, Öztop-Çakmak, Ö, Pimentel, MMG, Pulkes, T, Puschmann, A, Rogaeva, E, Sammler, EM, Petersen, MS, Skorvanek, M, Spitz, M, Suchowersky, O, Tan, AH, Termsarasab, P, Thaler, A, Tumas, V, Valente, EM, van de Warrenburg, B, Williams-Gray, CH, Wu, RM, Zhang, B, Zimprich, A, Solle, J, Padmanabhan, S & Klein, C 2023, '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 October, e0292180. https://doi.org/10.1371/journal.pone.0292180

Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project. / Vollstedt, Eva Juliane; Madoev, Harutyun; Aasly, Anna et al.
In: PLoS ONE, Vol. 18, No. 10 October, e0292180, 10.2023.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations

T2 - Experience from the MJFF Global Genetic Parkinson’s Disease Project

AU - Vollstedt, Eva Juliane

AU - Madoev, Harutyun

AU - Aasly, Anna

AU - Ahmad-Annuar, Azlina

AU - Al-Mubarak, Bashayer

AU - Alcalay, Roy N.

AU - Alvarez, Victoria

AU - Amorin, Ignacio

AU - Annesi, Grazia

AU - Arkadir, David

AU - Bardien, Soraya

AU - Barker, Roger A.

AU - Barkhuizen, Melinda

AU - Basak, A. Nazli

AU - Bonifati, Vincenzo

AU - Boon, Agnita

AU - Brighina, Laura

AU - Brockmann, Kathrin

AU - Belin, Andrea Carmine

AU - Carr, Jonathan

AU - Clarimon, Jordi

AU - Cornejo-Olivas, Mario

AU - Guedes, Leonor Correia

AU - Corvol, Jean Christophe

AU - Crosiers, David

AU - Damásio, Joana

AU - Das, Parimal

AU - de Carvalho Aguiar, Patricia

AU - De Rosa, Anna

AU - Dorszewska, Jolanta

AU - Ertan, Sibel

AU - Ferese, Rosangela

AU - Ferreira, Joaquim

AU - Gatto, Emilia

AU - Genç, Gençer

AU - Giladi, Nir

AU - Gómez-Garre, Pilar

AU - Hanagasi, Hasmet

AU - Hattori, Nobutaka

AU - Hentati, Faycal

AU - Hoffman-Zacharska, Dorota

AU - Illarioshkin, Sergey N.

AU - Jankovic, Joseph

AU - Jesús, Silvia

AU - Kaasinen, Valtteri

AU - Kievit, Anneke

AU - Klivenyi, Peter

AU - Kostic, Vladimir

AU - Koziorowski, Dariusz

AU - Kühn, Andrea A.

AU - Lang, Anthony E.

AU - Lim, Shen Yang

AU - Lin, Chin Hsien

AU - Lohmann, Katja

AU - Markovic, Vladana

AU - Martikainen, Mika Henrik

AU - Mellick, George

AU - Merello, Marcelo

AU - Milanowski, Lukasz

AU - Mir, Pablo

AU - Öztop-Çakmak, Özgür

AU - Pimentel, Márcia Mattos Gonçalves

AU - Pulkes, Teeratorn

AU - Puschmann, Andreas

AU - Rogaeva, Ekaterina

AU - Sammler, Esther M.

AU - Petersen, Maria Skaalum

AU - Skorvanek, Matej

AU - Spitz, Mariana

AU - Suchowersky, Oksana

AU - Tan, Ai Huey

AU - Termsarasab, Pichet

AU - Thaler, Avner

AU - Tumas, Vitor

AU - Valente, Enza Maria

AU - van de Warrenburg, Bart

AU - Williams-Gray, Caroline H.

AU - Wu, Ruey Mei

AU - Zhang, Baorong

AU - Zimprich, Alexander

AU - Solle, Justin

AU - Padmanabhan, Shalini

AU - Klein, Christine

N1 - Publisher Copyright: Copyright: © 2023 Vollstedt et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

PY - 2023/10

Y1 - 2023/10

N2 - 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.

AB - 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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U2 - 10.1371/journal.pone.0292180

DO - 10.1371/journal.pone.0292180

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C2 - 37788254

AN - SCOPUS:85172999938

SN - 1932-6203

VL - 18

JO - PLoS ONE

JF - PLoS ONE

IS - 10 October

M1 - e0292180

ER -

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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