So far we have 2923 participants that have fully consented to the study - and this number is growing daily. We now have a total of 40177 Questionnaires completed.
You can watch a short video here explaining the research into Fibrous Dysplasia:
Here is a video of Alex Ireland, one of our research collaborators on using Rudy Data for his research project.
There have been several papers already published using Rudy Data.
The RUDY study platform
This paper described how the RUDY study is different from other studies that are working on improving our understanding of rare bone diseases. It describes the recording of crucial information online as well as how the research is managed and kept secure.
Osteogenesis imperfecta: ultrastructural and histological findings
Osteogenesis Imperfecta is a rare bone disease that makes bones more fragile, so the break after even minor falls or injuries. This paper looked at a small group of patients with osteogenesis imperfecta in the RUDY study. The researchers from Sheffield were able to show how cells from a skin sample produce different protein structures. This new information will help with the diagnosis of osteogenesis imperfecta and help explain some of the other problems patients can have.
Health-related quality of life
This paper used information from adults with three more common rare bone diseases to describe how their quality of life as measured by mobility, ability to self-care, ability to carry out usual activities, pain/discomfort and anxiety/ depression. This information showed the differences between individuals, even with the same diagnosis, underlying that the same rare bone disease affects individuals differently.
The RUDY study
This paper describes how RUDY was set up with patients and then the steps that we took to design, build and then launch the website. The article describes the time of consent used in RUDY called dynamic consent as well as initial feedback from people who took part.
Physical function in UK adults with Osteogenesis
Osteogenesis Imperfecta is a rare bone disease that makes bones more fragile, so the break after even minor falls or injuries. This paper used information from adults with OI who completed questionnaires in the RUDY study. The research shows that adults with more nerve-like pain and tiredness had lower mobility and physical function. The impact of the severity of osteogenesis imperfecta was much smaller for measures of anxiety and depression.