Dr. Kassim Javaid of The Botnar Research Centre, Oxford University Hospital, NHS Foundation Trust – NHS healthcare resource use and costs for people with Osteogenesis Imperfecta
The care for adults with OI is fragmented, and most do not receive the quality of care they need. To address this, NHS England is developing a specification for expert rare bone disease centres. A Central concept is that better coordinated care leads to better outcomes for people with rare diseases, their family and the wider NHS. It is therefore crucial for the NHS to understand the healthcare services used by people with OI and their costs. This research application directly addresses these questions by describing how adults with OI use NHS services in hospitals as well as in the community. This information will be useful for people with OI, their families, clinicians and policymakers.
The results for the first part of this study have been published. You can read the paper here
Impact on Employment
The researchers are now looking into the impact of Osteogenesis Imperfecta on productivity, employment and unemployment.
They have analysed the first 30 responses and have potentially extremely useful results. To be impactful, we now need as many adults with OI, whether you are working, not working or retired to consider helping with this research
We ask all OI adults to consider joining this online study and completing the awkwardly named form VOLP (Valuation of Lost Productivity).
You can read more about the survey and consider joining www.rudystudy.org and clicking on the orange “Find out more” button. If you are happy to join, click on the green “Join us now” button.
After you have given consent, you will find a list of questionnaires to complete on your secure ‘To do’ page under ‘Please complete these first’ Health surveys. If you have already completed this questionnaire, completing the follow-up questionnaires at six months would be really helpful. If you have any questions about joining or about the study, do email us at firstname.lastname@example.org.
All the results will be anonymised and grouped together so no one will be identifiable. The findings will be sent to the BBS and a summary of the key messages will be put in your secure RUDY profile page so that you can see the value of your contribution to the study.
If you want to take part, please try to complete the questionnaires by the end of March 2022, so your inputs can be included.