Have you signed up to the Rudy Study?
The Rudy Study is a UK based study with an interest in understanding more about all aspects of rare diseases. The study is open to patients with Gorham’s disease (GSD) and/or lymphangiomatosis (GLA/KLA).
The Rudy Study aims to transform clinical care for participants through patient-driven research. The Rudy Study is a national network of doctors, researchers, patients and families working together to improve the understanding of rare diseases and develop new tests and treatments. The study is funded by a research partnership between the National Institute of Health Research (NIHR) Rare Diseases Translational Collaboration, NHS and the University of Oxford at the Musculoskeletal Biomedical Research Unit, Oxford. The Research Ethics Committee has reviewed and approved this study to protect participants interests.
This is an optional study in which you are invited to take part.
As an extremely small patient community of only 36 known UK patients, in order for the study to be effective and before researchers are able to analyse the information gathered on our diseases, we need more than 20 patients enrolled in this study. Can you help?
Please take the time to get involved. It is really easy to do. Once you are registered and have taken the initial survey, you will be notified every 6 months to retake the questionnaires based on how you are feeling that day. The information you give will allow researchers to see how the disease affects your quality of life over time – sleep, pain, ability to work or not and much more. Valuable information that can only come from you. Please join the Rudy Study and help researchers understand how our diseases affect our everyday lives.
For more information on the study and how to join up, check out their website and Facebook page.
We appreciate that your disease already takes up a lot of your time but being a small group of patients means that it is vital that we all get involved in order to make a difference. If you have any questions or concerns, email ku.gr1558733318o.enl1558733318imeif1558733318la@yc1558733318art1558733318 or contact the Study Administrator gro.y1558733318duryd1558733318uts@n1558733318imda1558733318.