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Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force.
Nabbout, Rima; Zanello, Galliano; Baker, Dixie; Black, Lora; Brambilla, Isabella; Buske, Orion J; Conklin, Laurie S; Davies, Elin Haf; Julkowska, Daria; Kim, Yeonju; Klopstock, Thomas; Nakamura, Harumasa; Nielsen, Kim G; Pariser, Anne R; Pastor, Jose Carlos; Scarpa, Maurizio; Smith, Maureen; Taruscio, Domenica; Groft, Stephen.
Afiliación
  • Nabbout R; Department of Pediatric Neurology, Reference Center for Rare Epilepsies, Hôpital Necker-Enfants Malades, APHP, member of ERN EPICARE, Institut Imagine, INSERM U1163, Université Paris Cité, Paris, France. rima.nabbout@aphp.fr.
  • Zanello G; Institut National de la Santé et de la Recherche Médicale, Paris, France.
  • Baker D; Martin, Blanck, and Associates, Arlington, VA, USA.
  • Black L; Sanford Research, Sioux Falls, SD, USA.
  • Brambilla I; Dravet Italia Onlus Italy - ePAG EpiCARE, Verone, Italy.
  • Buske OJ; PhenoTips, Toronto, ON, Canada.
  • Conklin LS; ReveraGen BioPharma, Rockville, MD, USA.
  • Davies EH; Aparito Limited, Metabolic Support UK, Wrexham, UK.
  • Julkowska D; Institut National de la Santé et de la Recherche Médicale, Paris, France.
  • Kim Y; Korea Disease Control and Prevention Agency, Cheongju-si, Chungcheongbuj-do, Korea.
  • Klopstock T; Friedrich-Baur-Institute, Department of Neurology, LMU Klinikum, Ludwig-Maximilians-Universität München, Ziemssenstr. 1, 80336, Munich, Germany.
  • Nakamura H; Department of Clinical Research Support, Clinical Research and Education Promotion Division, National Center of Neurology and Psychiatry, Tokyo, Japan.
  • Nielsen KG; Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.
  • Pariser AR; Alltrna, Cambridge, MA, USA.
  • Pastor JC; IOBA (Eye Institute), University of Valladolid, Valladolid, Spain.
  • Scarpa M; Regional Coordinating Center for Rare Diseases, Udine University Hospital, Udine, Italy.
  • Smith M; European Reference Network. For Hereditary Metabolic Diseases (MetabERN), Dublin, Ireland.
  • Taruscio D; Canadian Organization for Rare Disorders, Toronto, ON, Canada.
  • Groft S; National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy.
Orphanet J Rare Dis ; 18(1): 109, 2023 05 09.
Article en En | MEDLINE | ID: mdl-37161573
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Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Productos Biológicos / Enfermedades Raras Tipo de estudio: Guideline Límite: Humans Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2023 Tipo del documento: Article País de afiliación: Francia
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Productos Biológicos / Enfermedades Raras Tipo de estudio: Guideline Límite: Humans Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2023 Tipo del documento: Article País de afiliación: Francia