Establishing an online resource to facilitate global collaboration and inclusion of underrepresented populations: Experience from the MJFF Global Genetic Parkinson’s Disease Project
Authors: Vollstedt Eva-Juliane , Madoev Harutyun , Aasly Anna , Ahmad-Annuar Azlina , Al-Mubarak Bashayer , Alcalay Roy N. , Alvarez Victoria , Amorin Ignacio , Annesi Grazia , Arkadir David , Bardien Soraya , Barker Roger A. , Barkhuizen Melinda , Basak A. Nazli , Bonifati Vincenzo , Boon Agnita , Brighina Laura , Brockmann Kathrin , Carmine Belin Andrea , Carr Jonathan , Clarimon Jordi , Cornejo-Olivas Mario , Correia Guedes Leonor , Corvol Jean-Christophe , Crosiers David , Damásio Joana , Das Parimal , de Carvalho Aguiar Patricia , De Rosa Anna , Dorszewska Jolanta , Ertan Sibel , Ferese Rosangela , Ferreira Joaquim , Gatto Emilia , Genç Gençer , Giladi Nir , Gómez-Garre Pilar , Hanagasi Hasmet , Hattori Nobutaka , Hentati Faycal , Hoffman-Zacharska Dorota , Illarioshkin Sergey N. , Jankovic Joseph , Jesús Silvia , Kaasinen Valtteri , Kievit Anneke , Klivenyi Peter , Kostic Vladimir , Koziorowski Dariusz , Kühn Andrea A. , Lang Anthony E. , Lim Shen-Yang , Lin Chin-Hsien , Lohmann Katja , Markovic Vladana , Martikainen Mika Henrik , Mellick George , Merello Marcelo , Milanowski Lukasz , Mir Pablo , Öztop-Çakmak Özgür , Pimentel Márcia Mattos Gonçalves , Pulkes Teeratorn , Puschmann Andreas , Rogaeva Ekaterina , Sammler Esther M. , Skaalum Petersen Maria , Skorvanek Matej , Spitz Mariana , Suchowersky Oksana , Tan Ai Huey , Termsarasab Pichet , Thaler Avner , Tumas Vitor , Valente Enza Maria , van de Warrenburg Bart , Williams-Gray Caroline H. , Wu Ruey-Mei , Zhang Baorong , Zimprich Alexander , Solle Justin , Padmanabhan Shalini , Klein Christine 
Published: October 2023

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.