The TREAT‐NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

The TREAT‐NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

Source :

• Human Mutation [ 1059-7794 ] ; 2013-11.

Descripteurs français

• Wicri :
  • topic : Base de données, Neurologie.

English descriptors

• KwdEn :
  • Action duchenne, Annual funding, Bushby, Centre, Clinical outcomes, Clinical research, Clinical trial activities, Clinical trial participation, Clinical trials, Critical analysis, Czech republic, Data providers, Data sets, Database, Different countries, Disease registry, Disease surveillance, Duchenne, Duchenne patients, Dystrophy, Dystrophy patients, Enquiry, Epidemiological research, Exon, External experts, Family history, Feasibility, Feasibility studies, Filippo buccella, Funding, Genetic diagnosis, Genetic disease, Genetic medicine, Global, Global registry, Hanns lochmuller, Harmonized, Healthcare research, Healthcare services planning, Human mutation, Individual countries, Industrial partners, Initial funding, Initial funding period, Internal registry staff, International level, Janbernd kirschner, Japanese duchenne, Kevin flanigan, Leiden university, Molecular diagnosis, Muscle biopsy, Muscular dystrophy, Mutation, Mutation data collection, National centre, National level, National registries, National registry, Natural history, Natural history surveys, Neurology, Neuromuscul disord, Neuromuscular, Neuromuscular diseases, Novel japanese, Original registries, Outcome measures, Oversight committee, Paediatric neurology, Patient advocacy groups, Patient care, Patient demographics, Patient information, Patient organizations, Patient population, Patient registries, Patient registry, Patient representatives, Peking union, Quality control, Rare disease, Rare diseases, Recruitment enquiry, Registry, Registry curators, Research environment, Social planning, Surveillance registries, Third party approaches, Thomas sejersen, Trial site registry, Turku university, Western australia, Wider community, Wiley periodicals.
• Teeft :
  • Action duchenne, Annual funding, Bushby, Centre, Clinical outcomes, Clinical research, Clinical trial activities, Clinical trial participation, Clinical trials, Critical analysis, Czech republic, Data providers, Data sets, Database, Different countries, Disease registry, Disease surveillance, Duchenne, Duchenne patients, Dystrophy, Dystrophy patients, Enquiry, Epidemiological research, Exon, External experts, Family history, Feasibility, Feasibility studies, Filippo buccella, Funding, Genetic diagnosis, Genetic disease, Genetic medicine, Global, Global registry, Hanns lochmuller, Harmonized, Healthcare research, Healthcare services planning, Human mutation, Individual countries, Industrial partners, Initial funding, Initial funding period, Internal registry staff, International level, Janbernd kirschner, Japanese duchenne, Kevin flanigan, Leiden university, Molecular diagnosis, Muscle biopsy, Muscular dystrophy, Mutation, Mutation data collection, National centre, National level, National registries, National registry, Natural history, Natural history surveys, Neurology, Neuromuscul disord, Neuromuscular, Neuromuscular diseases, Novel japanese, Original registries, Outcome measures, Oversight committee, Paediatric neurology, Patient advocacy groups, Patient care, Patient demographics, Patient information, Patient organizations, Patient population, Patient registries, Patient registry, Patient representatives, Peking union, Quality control, Rare disease, Rare diseases, Recruitment enquiry, Registry, Registry curators, Research environment, Social planning, Surveillance registries, Third party approaches, Thomas sejersen, Trial site registry, Turku university, Western australia, Wider community, Wiley periodicals.

Abstract

• https://api.istex.fr/document/ED09C20547A46A07FCD5E3437FB6E3F693AC792D/fulltext/pdf

Affiliations:

• Allemagne, Argentine, Australie, Belgique, Bulgarie, Canada, Croatie, Danemark, Espagne, Finlande, France, Hongrie, Inde, Iran, Italie, Japon, Nouvelle-Zélande, Pays-Bas, Pologne, Portugal, Roumanie, Royaume-Uni, Russie, République populaire de Chine, République tchèque, Serbie, Suisse, Suède, Turquie, Ukraine
• Alberta, Angleterre, Bade-Wurtemberg, Bavière, Canton de Vaud, Communauté de Madrid, District de Fribourg-en-Brisgau, District de Haute-Bavière, District fédéral central, Finlande occidentale, Grand Londres, Hollande-Méridionale, Hongrie centrale, Languedoc-Roussillon, Latium, Lombardie, Moravie, Occitanie (région administrative), Région de Bruxelles-Capitale, Région de Kantō, Sofia-ville (oblast), Île-de-France
• Brno, Bruxelles, Budapest, Calgary, Fribourg-en-Brisgau, Lausanne, Leyde, Londres, Madrid, Milan, Montpellier, Moscou, Munich, Paris, Pékin, Rome, Sofia, Tokyo, Turku
• Université Louis-et-Maximilien de Munich, Université de Calgary

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