Research register provides rapid access to rare renal disease patients


So RaDaR is a data repository for
consenting patients across the UK with rare diseases. We’ve now got a hundred
and two different hospitals that are recruiting patients, and around 25,000
people, with around 30 categories of rare diseases, rather more individual rare
diseases, and the number of patients ranges from over 6,000 people with
polycystic kidney disease to around a thousand people with other disorders
like Alport syndrome and membranous glomerulonephritis and very
small numbers of people with sort of ultra rare diseases. When patients sign
up to RaDaR, the reason for signing up is to participate in research,
and the implication and – as stated in the consent form – they are waiting to be
contacted for research studies whether those are academic research or
interventional research and that’s what patients are expecting. They understand
that having a rare disease puts them at a disadvantage because they need to make
contact with other, or they might want to make contact with other, people
suffering from the same disorders that they can form networks for stimulating
research and of course providing a cohort that’s big enough to answer a
research question here is a really powerful thing and the overwhelming
enthusiasm from patients is what struck me ever since I first got involved in
RaDaR. The second purpose is it allows us to collect information about patients.
the RaDaR registry includes automated data feeds of hospital laboratory data
and also clinic clinical data from patients who have all given their
consent for this data to be collected and that’s all collected together at the
renal registry, and then in what we call pseudo anonymize form which is, with the
patient identifiers removed, researchers can then look at what the – for instance –
progression of renal disease illustrated by their changes in serum creatinine in
individual patients with a you know disease has been over time and
we can also look at use of renal replacement therapy because all patients
are registered with the renal registry once they start on dialysis or receive a
kidney transplant and so we’ve we’ve got a growing retrospective and prospective
collection of of certain clinical information which which spreads right
across the country in addition to that we have data feeds that are
inputted manually or collected separately where the RaDaR registry
forms is the sort of case record form – if you like – for clinical studies that
are either ongoing or that are planned in the future and researchers can with a
research question can access that data and answer specific questions about what
the effect of a disease is on patients or what the effect of an intervention is
on patients or correlate and things like genetic data with clinical data across
large groups of patients with rare diseases. Among other things we’re using
the the power of the NHS the the same healthcare service provider that across
the country to enroll patients from a large geographical area and a large
population (so 60 million people live in the country) and they all have a
relatively standardized care in terms of delivery of renal patient therapy and
also delivery of treatments and monitoring for for renal disease.

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