The International Rare Diseases Research Consortium: Policies and Guidelines to maximize impact
MetadataShow full item record
© 2017 European Society of Human Genetics. The International Rare Diseases Research Consortium (IRDiRC) has agreed on IRDiRC Policies and Guidelines, following extensive deliberations and discussions in 2012 and 2013, as a first step towards improving coordination of research efforts worldwide. The 25 funding members and 3 patient umbrella organizations (as of early 2013) of IRDiRC, a consortium of research funders that focuses on improving diagnosis and therapy for rare disease patients, agreed in Dublin, Ireland in April 2013 on the Policies and Guidelines that emphasize collaboration in rare disease research, the involvement of patients and their representatives in all relevant aspects of research, as well as the sharing of data and resources. The Policies and Guidelines provide guidance on ontologies, diagnostics, biomarkers, patient registries, biobanks, natural history, therapeutics, models, publication, intellectual property, and communication. Most IRDiRC members - currently nearly 50 strong - have since incorporated its policies in their funding calls and some have chosen to exceed the requirements laid out, for instance in relation to data sharing. The IRDiRC Policies and Guidelines are the first, detailed agreement of major public and private funding organizations worldwide to govern rare disease research, and may serve as a template for other areas of international research collaboration. While it is too early to assess their full impact on research productivity and patient benefit, the IRDiRC Policies and Guidelines have already contributed significantly to improving transparency and collaboration in rare disease research.
Showing items related by title, author, creator and subject.
Improved diagnosis and care for rare diseases through implementation of precision public health frameworkBaynam, Gareth; Bowman, F.; Lister, K.; Walker, C.; Pachter, N.; Goldblatt, J.; Boycott, K.; Gahl, W.; Kosaki, K.; Adachi, T.; Ishii, K.; Mahede, T.; McKenzie, Fiona; Townshend, S.; Slee, J.; Kiraly-Borri, C.; Vasudevan, A.; Hawkins, A.; Broley, S.; Schofield, L.; Verhoef, H.; Groza, T.; Zankl, A.; Robinson, P.; Haendel, M.; Brudno, M.; Mattick, J.; Dinger, M.; Roscioli, T.; Cowley, M.; Olry, A.; Hanauer, M.; Alkuraya, F.; Taruscio, D.; Posada De La Paz, M.; Lochmüller, H.; Bushby, K.; Thompson, R.; Hedley, V.; Lasko, P.; Mina, K.; Beilby, J.; Tifft, C.; Davis, M.; Laing, N.; Julkowska, D.; Le Cam, Y.; Terry, S.; Kaufmann, P.; Eerola, I.; Norstedt, I.; Rath, A.; Suematsu, M.; Groft, S.; Austin, C.; Draghia-Akli, R.; Weeramanthri, Tarun; Molster, C.; Dawkins, Hugh (2017)© Springer International Publishing AG 2017. Public health relies on technologies to produce and analyse data, as well as effectively develop and implement policies and practices. An example is the public health practice ...
Improving health outcomes by preventing intensive care related infection in Malaysia Intensive Care Unit (INVEST study)Soh, Kim Lam (2012)Ventilator-associated pneumonia (VAP), catheter-related blood stream infection (CRBSI) and pressure ulcers (PU) are well recognized complications in intensive care units (ICUs). Many of these are preventable but can also ...
Coulston, A.; Boushey, Carol; Ferruzzi, M. (2013)Expertly edited, the Second Edition of Nutrition in the Prevention and Treatment of Disease offers 18 completely new chapters and 50% overall material updated. Given its unique focus and extensive coverage of clinical ...