Javaid Group | Rare Bone Diseases and Osteoporosis Epidemiology
We are interested in studying all aspects of rare disease of the musculoskeletal system. At present we are prioritising disorders including skeletal dysplasia / metabolic bone diseases, vasculitides, arthritides and connective tissue diseases, rare reactions to bone therapies and myeloma.
The RUDY Study is our main project and aims to transform clinical care for participants from birth to late adulthood through patient driven research. RUDY is an NIHR RD TRC / NIHR Biomedical Research Centre funded national network with a hub in Oxford and involves over 20 academic centres and NHS trusts with close links to 7 charities.
A key feature of RUDY is a web-based recruitment and assessment database for eligible participants that permit collection baseline generic phenotyping data including diagnosis, demographics, quality of life, pain, sleep, fatigue, activities of daily living, anxiety and depression, and in some fracture and medication.
Consent also permits access to participants' NHS and social care records as well as re-contacting participants for new clinical studies/ trials they could be eligible for.
For more information visit the rudystudy.org and click on more information orange button or the blue Researchers button on the top right.
A quarter of Patients with rare diseases wait up to 30 years for a diagnosis and 95% of rare diseases have no treatment. In addition the quality of care for rare disease patients is variable. The aim of Rudy is to transform research in patients with rare diseases and provide evidence to improve patients' outcomes and reduce variability of care.
NIHR Rare Disease Translational Research Collaboration