Neurologists commonly lack reliable reference data to be able to offer tailored counseling and treatment to patients with genetic PD and other hereditary neurological diseases. There is an increasing necessity for ideally global-scale team science approaches of clinicians and researchers with similar interests joining forces to promote advanced research and to improve patient care. Employing novel methods of team science, electronic databases, and global communication, we performed a worldwide survey of genetic PD with an emphasis on the availability of demographic, clinical, omics, and imaging data as well as of biomaterials, to both foster and exploit global collaboration. Our worldwide collaborative effort revealed an unprecedented level of data completeness.Team science of clinicians and researchers in the field of rare neurological diseases will facilitate sharing of expertise, promote new research opportunities, offer a network to foster new training opportunities for young researchers, and advance development of individualized therapies.
Using global team science to identify genetic parkinson's disease worldwide / Vollstedt, E. -J.; Kasten, M.; Klein, C.; Aasly, J.; Adler, C.; Ahmad-Annuar, A.; Albanese, A.; Alcalay, R. N.; Al-Mubarak, B.; Alvarez, V.; Andree-Munoz, B.; Annesi, G.; Appel-Cresswell, S.; Arkadir, D.; Armasu, S.; Barber, T. R.; Bardien, S.; Barkhuizen, M.; Barrett, M. J.; Basak, A. N.; Beach, T.; Benitez, B. A.; Berg, D.; Bhatia, K.; Binkofski, F.; Blauwendraat, C.; Bonifati, V.; Borges, V.; Bozi, M.; Brice, A.; Brighina, L.; Brockmann, K.; Brucke, T.; Bruggemann, N.; Camacho, M.; Cardoso, F.; Belin, A. C.; Carr, J.; Chan, P.; Chang-Castello, J.; Chase, B.; Chen-Plotkin, A.; Ju Chung, S.; Cilia, R.; Clarimon, J.; Clark, L.; Cornejo-Olivas, M.; Corvol, J. -C.; Cosentino, C.; Cras, P.; Crosiers, D.; Damasio, J.; Das, P.; de Carvalho Aguiar, P.; De Michele, G.; De Rosa, A.; Dieguez, E.; Dorszewska, J.; Erer, S.; Ertan, S.; Farrer, M.; Fedotova, E.; Ferese, R.; Ferrarese, C.; Ferraz, H.; Fiala, O.; Foroud, T.; Friedman, A.; Frigerio, R.; Funayama, M.; Gambardella, S.; Garraux, G.; Gatto, E. M.; Genc, G.; Giladi, N.; Goldwurm, S.; Gomez-Esteban, J. C.; Gomez-Garre, P.; Gorostidi, A.; Grosset, D.; Hanagasi, H.; Hardy, J.; Hassan, A.; Hattori, N.; Hauser, R. A.; Hedera, P.; Hentati, F.; Hertz, J. M.; Holton, J. L.; Houlden, H.; Hutz, M. H.; Ikeuchi, T.; Illarioshkin, S.; Inca-Martinez, M.; Infante, J.; Jankovic, J.; Jeon, B. S.; Jesus, S.; Jimenez-Del-Rio, M.; Kaasinen, V.; Kasten, M.; Kataoka, H.; Kawakami, H.; Kim, Y. J.; Klein, C.; Klivenyi, P.; Koks, S.; Konig, I. R.; Kostic, V.; Koziorowski, D.; Kruger, R.; Krygowska-Wajs, A.; Kulisevsky, J.; Lai, D.; Lang, A.; LeDoux, M.; Lesage, S.; Lim, S. -Y.; Lin, C. -H.; Lohmann, K.; Lopera, F.; Lopez, G.; Lu, C. -S.; Lynch, T.; Machaczka, M.; Madoev, H.; Magalhaes, M.; Majamaa, K.; Maraganore, D.; Marder, K.; Markopoulou, K.; Martikainen, M. H.; Mata, I.; Mazzetti, P.; Mellick, G.; Menendez-Gonzalez, M.; Micheli, F.; Mirelman, A.; Mir, P.; Morino, H.; Morris, H.; Munhoz, R. P.; Naito, A.; Olszewska, D. A.; Ozelius, L. J.; Padmanabhan, S.; Paisan-Ruiz, C.; Payami, H.; Peluso, S.; Petkovic, S.; Petrucci, S.; Pezzoli, G.; Pimentel, M.; Pirker, W.; Pramstaller, P. P.; Pulkes, T.; Puschmann, A.; Quattrone, A.; Raggio, V.; Ransmayr, G.; Rieder, C.; Riess, O.; Rodriguez-Porcel, F.; Rogaeva, E.; Ross, O. A.; Ruiz-Martinez, J.; Sammler, E.; San Luciano, M.; Satake, W.; Saunders-Pullman, R.; Sazci, A.; Scherzer, C.; Schrag, A.; Schumacher-Schuh, A.; Sharma, M.; Sidransky, E.; Singleton, A. B.; Petersen, M. S.; Smolders, S.; Spitz, M.; Stefanis, L.; Struhal, W.; Sue, C. M.; Swan, M.; Swanberg, M.; Taba, P.; Taipa, R.; Tan, M.; Tan, A. H.; Tan, E. -K.; Tang, B.; Tayebi, N.; Thaler, A.; Thomas, A.; Toda, T.; Toft, M.; Torres, L.; Tumas, V.; Valente, E. M.; Van Broeckhoven, C.; Vecsei, L.; Velez-Pardo, C.; Vidailhet, M.; Vollstedt, E. -J.; Warner, T. T.; Williams-Gray, C. H.; Winkelmann, J.; Woitalla, D.; Wood, N. W.; Wszolek, Z. K.; Wu, R. -M.; Wu, Y. -R.; Xie, T.; Yoshino, H.; Zhang, B.; Zimprich, A.. - In: ANNALS OF NEUROLOGY. - ISSN 0364-5134. - 86:2(2019), pp. 153-157. [10.1002/ana.25514]
Using global team science to identify genetic parkinson's disease worldwide
Mata I.;Petrucci S.;Pezzoli G.;Sharma M.;Taba P.;Tang B.;Torres L.;Xie T.;Yoshino H.;
2019
Abstract
Neurologists commonly lack reliable reference data to be able to offer tailored counseling and treatment to patients with genetic PD and other hereditary neurological diseases. There is an increasing necessity for ideally global-scale team science approaches of clinicians and researchers with similar interests joining forces to promote advanced research and to improve patient care. Employing novel methods of team science, electronic databases, and global communication, we performed a worldwide survey of genetic PD with an emphasis on the availability of demographic, clinical, omics, and imaging data as well as of biomaterials, to both foster and exploit global collaboration. Our worldwide collaborative effort revealed an unprecedented level of data completeness.Team science of clinicians and researchers in the field of rare neurological diseases will facilitate sharing of expertise, promote new research opportunities, offer a network to foster new training opportunities for young researchers, and advance development of individualized therapies.File | Dimensione | Formato | |
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