Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project
Vollstedt, E.-J. ; Puschmann, A. LU
and Klein, C.
(2023)
In PLoS ONE
18(10 October).
- 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... (More)
- 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. 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. (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/9c6c5438-2ba6-46e1-ae01-ab4893343d7b
- author
- Vollstedt, E.-J.
; Puschmann, A.
LU
and Klein, C.
- author collaboration
- organization
- publishing date
- 2023
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Humans, Palliative Care, Parkinson Disease, genetics, human, palliative therapy, Parkinson disease
- in
- PLoS ONE
- volume
- 18
- issue
- 10 October
- article number
- e0292180
- publisher
- Public Library of Science (PLoS)
- external identifiers
-
- scopus:85172999938
- pmid:37788254
- ISSN
- 1932-6203
- DOI
- 10.1371/journal.pone.0292180
- language
- English
- LU publication?
- yes
- id
- 9c6c5438-2ba6-46e1-ae01-ab4893343d7b
- date added to LUP
- 2024-01-24 11:32:37
- date last changed
- 2024-01-25 03:00:26
@article{9c6c5438-2ba6-46e1-ae01-ab4893343d7b,
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. 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.}},
author = {{Vollstedt, E.-J. and Puschmann, A. and Klein, C.}},
issn = {{1932-6203}},
keywords = {{Humans; Palliative Care; Parkinson Disease; genetics; human; palliative therapy; Parkinson disease}},
language = {{eng}},
number = {{10 October}},
publisher = {{Public Library of Science (PLoS)}},
series = {{PLoS ONE}},
title = {{Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project}},
url = {{http://dx.doi.org/10.1371/journal.pone.0292180}},
doi = {{10.1371/journal.pone.0292180}},
volume = {{18}},
year = {{2023}},
}