Rare Kidney Disease Registry, RaDaR
RaDaR will be the most powerful way to gather new information on the disease and also permit the design of the highest quality clinical trials for new treatments in the future.
RaDar enables long-term surveillance and this will allow outcomes into adulthood to be described for the first time.
The impact of this will improve health care for people with long term conditions and improve understanding and the delivery of transitional services for people with renal disease.
We will know more accurate information of patient cohorts this will improve the likelihood of successful grant applications as we have a better understanding of numbers more likely to participate.
The rare disease initiative has been successful in recruitment. Plans are underway to develop an international version and recruitment targets have already been amended from 10,000 to 25,000. The impact of this is that the more patients we have successfully recruited the more meaningful any research will be as it is tested on a larger number of patients.
The RaDaR website is continually updated and allows patient/parent access, clinical information, discussion groups and access to the latest literature. The impact of this is patients have improved access and understanding of their condition and feel reassured and more confident living with a rare condition.
Clinical teams are connected and learning in real time about rare disease. Research outcomes are applied more quickly across the UK improving patient care.
The input of key funders as well as the pharmaceutical companies means that academics and industry partners are more easily connected. Academics and industry can collaborate more easily and share learning more effectively. There is less research duplicity and research is applied more quickly when industry and academics work together.