European Medicines Agency - Regulatory - Regulation of medicines

2 - Network organisation and process

    Description

Name

  

TREAT-NMD - Neuromuscular Network
Existence of an identified contact person for external enquiries Yes
Existence of an internal steering committee Yes Annemieke Aartsma-Rus (Leiden University Medical Centre, The Netherlands) Eric Hoffman (Vice Chair) (Children’s National Medical Centre, USA) Filippo Buccella (Parent Project Onlus, Italy) Vice-Chair Kevin Flanigan (Ohio State University, USA) - Chair Janbernd Kirschner (University Medical Centre Freiburg, Germany) Eugenio Mercuri (Università Cattolica del Sacro Cuore, Italy) Ichizo Nishino (National Center of Neurology and Psychiatry, Japan) Jes Rahbek (The Rehabilitation Centre for Neuromuscular Diseases, Denmark) 160 Thomas Sejersen (Karolinska Institute, Sweden) J. Andoni Urtizberea (Hôpital Marin de Hendaye - France)
Existence of an external advisory steering committee directing the reporting party Yes TREAT-NMD strategic activities are overseen by an external Executive Committee.
Existence of a website Yes www.treat-nmd.eu
Existence of newsletter Yes Electronic email newsletter distributed to around 3,500 stakeholders
Existence of internal databases for disease, condition treatment and/or outcome Yes
Provisions to ascertain data protection and data security Yes Please see the link: http://www.treat-nmd.eu/downloads/file/TGDOC_Charter_2016.pdf
Procedures to access the database by third parties Yes Access to data (TREAT-NMD Global Registries) is governed by a Charter and the TREAT-NMD Global Database Oversight Committee (TGDOC).
Access to external databases/registries Yes
Standardised process to access an external database No The TREAT-NMD Global Registries are governed by a Charter and the TREAT-NMD Global Database Oversight Committee (TGDOC). Researchers and pharmaceutical companies interested in locating patients for a clinical trial are able to request information from the TREAT-NMD Global Registry meaning that they can speedily find the information they need.