Most of our news tends to be about events and people in the United States, and we know that there's so much exciting work going on all around the world. We're going to remedy that, starting now.
To kick things off, our board member, Oliver Gardiner, who lives in the UK, sent us information about the RUDY project there, which is a combination patient registry and natural history study, both of which are critical projects for understanding diseases. It's particularly important for rare ones like XLH, where no significant natural history study (the whole picture of a condition, from birth to grave) has ever been done. The more data (i.e., patients and their records) that a natural history study has, the more useful it can be for understanding the condition and treating future patients.
Oliver is part of the External Advisory Committee for the RUDY Study. They met recently at the Nuffield Dept. of Orthopaedics, Rheumatology and Musculoskeletal Sciences at the University of Oxford.
The day was used to analyse current processes with the aim to make our UK XLH patients' involvement as simple and flexible as possible.
RUDY are a national network of doctors, researchers, patients and families that work together to improve understanding of rare diseases and develop new tests and treatments. They are funded by NIHR Rare Diseases Translational Research Collaboration and the Oxford NIHR Musculoskeletal Biomedical Research Unit, University of Oxford.
Recruitment for the RUDY Study is now open to all patients with XLH who live in the UK and are currently appealing for patients to take part.
If you are interested in finding out more including how to register please check the library on https://research.ndorms.ox.ac.uk/ru
And if you know of something XLH-related happening in your corner of the world, please send it to XLHstories at gmail dot com. We want to hear from you!