So far we have 4134 participants that have fully consented to the study - and this number is growing daily. We now have a total of 91043 Questionnaires completed.
The NHS Highly Specialised Service for Mitochondrial Disease (HSS) in Oxford, Newcastle and London have teamed up with the Lily Foundation Charity to build an exciting new MITO-PROM platform which allows UK patients to enter information about their mitochondrial disease to advance research and improve care.
The MITO-PROM is part of a bigger RUDY research study which has been collecting data on a number of rare diseases since 2014, but up until now, mitochondrial patients have not been fully represented.
MITO-PROM is the first national patient driven research platform for mitochondrial disease. Data entered into this platform is for research purposes only, and will not be monitored for health intervention.find out more
What are PROM’s?
Patient Reported Outcome Measures (PROM’s) are reports coming directly from patients about how they feel or function in relation to a health condition, without interpretation by healthcare professionals.
Why are they so useful?
The patient experience has played a part in clinical research for some time, but there is increasing recognition that a patient-centered approach is vital for comprehensive assessment of the impact of treatments and clinical care.
PROM’s help us:
Your experiences will help speed up the development of drugs to treat mitochondrial disease and also improve patient care through the NHS.How do I know where my data is being used?
Your initial consent determines who you allow to access your data. There is also a section on your profile that informs you where your data has been used and by whom.
This project was generously sponsored by WCMR, Lily Foundation and My Mito Mission.
The PREPARE project aims to understand the risk COVID-19 poses for patients with blood cancers using information from participants from the RUDY study.
The first wave of the project will focus on myeloma patients who have joined the RUDY study. The information collected will help healthcare professionals and patients work together to balance the potential risk of COVID-19 and blood cancer management appropriately.
You can find out more here.
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.