Improving the Governance and Efficacy of Rare Disease Research by Ensuring the Integration of Patients’ Perspectives
- Submitting institution
-
University of Newcastle upon Tyne
- Unit of assessment
- 21 - Sociology
- Summary impact type
- Health
- Request cross-referral to
- -
- Is this case study continued from a case study submitted in 2014?
- No
- Underpinning research subjects
-
- Genetics
- Clinical Sciences
- Applied Ethics
3. References to the research
5. Sources to corroborate the impact
Additional contextual information
Grant funding
| Grant number |
Value of grant |
| LSHM-CT-2006-036825 |
£1,357,222 |
| 305444 |
£1,071,786 |
- Countries
-
- United Kingdom
- European Union
- Formal partners
-
- Kings College London
- Imperial College of Science Technology & Medicine
- Medical Research Council
- Association Francaise Contre les Myopathies
- Karolinska Institutet
- Santhera Pharmaceuticals
- European Neuromuscular Centre
- Universite Catholique de Louvain
- Universitat Autonoma de Barcelona
- Leiden University Medical Center
- University of Basel
- Summit Corporation plc
- Genosafe SA
- University of Helsinki
- Institut National de la Sante et de la Recherche Medicale (INSERM)
- Fodor Jozsef National Center for Public Health
- Fondazione Telethon
- Profets et Reseaux de Recherche P2R
- Eurordis
- Muskeldystrophie Netzwork
- Vastox Plc
- European Organisation for Rare Disease
- Karolinska Institutet
- Murdoch University
- Leiden University Medical Center
- University of Zurich
- Universidade de Aveiro (University of Aveiro)
- University of Patras (UPAT)
- European Molecular Biology Organisation
- Universitaet Ulm
- Medical University of Graz
- Univerzita Karlova V praze
- Parc cientific de Barcelona
- Fundacion Centro Nacional de Investigaciones Oncologicas Carlos IIII
- Universitair Medisch Centrum Groningen - UMCG
- Uppsala University
- Barcelona Supercomputing Centre - Centro Nacional de Supercomputacion
- Instituto Superiore di Sanita
- Aix Marseille University
- FINOVATIS
- Instituto de Salud Carlos III
- Interactive Biosoftware SARL
- Innolyst Inc. Corporation PatientCrossroads
- Universite Paris Diderot - Paris 7
- University of Malta
- Fondation Maladies Rares
- National Institute of Health - Office of Rare Diseases Research
- Department of Health - Government of Western Australia
- The Centre for Genomic Regulation (CRG)
- BBMRI-ERIC
- Funding programmes
-
- FP6 Network of Excellence
- FP7 RTD
- Global research identifiers
-
- Name of funders
-
- Researcher ORCIDs
-
- 0000-0002-0172-1753
- 0000-0002-8998-5234
