Rare UK Bone, Joint and Blood Vessel Study (RUDY)
Dr Kassim Javaid is among a group of doctors from the Botnar Research Institute in Oxford who have set up RUDY, a project aimed at 'Uniting Patients and Researchers to Investigate Rare Diseases'. Fibrous Dysplasia is one of the diseases included in this study. Once they have given their consent, patients will be asked to give information about their condition onto a data base. Patient confidentiality will be assured.
Recruitment is now open to all adults and children with Fibrous Dysplasia, with a particular area of research into adults with and without pain from their bone cysts. If you are interested in finding out more, including how to register, please check the library on RUDY's website www.rudystudy.org.
There was a kick-off meeting about the project in Oxford on 21st March, where patients and doctors tried using the data base. Three members of the FDSS attended. This trial day generated some changes to the data base which are still being implemented.
The following presentations were made during the meeting and give more information about the project: