The RaDaR Operational Management Board and Rare Disease Group Leads have agreed to apply for an Ethics amendment to clarify the fact that RaDaR consent covers Patient View sign-up, subject to availability at individual renal units.
The proposed amendment will also allow for data linkage to other registries, including the Hospital Episode Statistics (HES) and Office for National Statistics (ONS) databases. This will allow for a far more comprehensive RaDaR data-set than is currently available with manual data entry. It will also allow for longitudinal follow-up of patients who have previously consented to condition-specific research studies, or who do so in the future.
In addition, it is proposed to ask patients to consent to being contacted directly by a member of the central RaDaR team, regarding information events or further research studies. Such communication would always be approved by the patient’s Consultant before being sent out and will largely be circulated via Patient View.
Approval will be sought from NHS Digital’s data Access Request Service (DARS).
It is aimed to submit the Ethics amendment by the of September. Please continue to recruit patients to RaDaR in the meantime, using the current consent documents.
Further details will follow in the coming weeks but we would welcome suggestions over the proposed amendment to Melanie.Dillon@RenalRegistry.nhs.uk.
RaDaR features as a Case Study on the new Understanding Patient Information website, with the focus on supporting research into rare kidney disease.
Prof Detlef Bockenhauer, chair of the Rare Disease Committee of the Renal Association, is hosting a forum to help clinicians and researchers to better understand RaDaR and Fabry Disease in particular. The event will be held during UK Kidney Week on Monday 19th June 2017 at the Pullman Hotel, Kings Dock, Liverpool, L3 4FP
The meeting has been organised by Sanofi Genzyme and will include a buffet dinner.
Places are limited and attendees are asked to RSVP to John Applegate at firstname.lastname@example.org
In regards to the recent cyber attack on the NHS, we want to reassure you that RaDaR has not been affected and that the patients’ data remains secure.
Neither the RaDaR servers nor North Bristol Trust (where our admin team are based) have been affected by this attack. Although data transfer to Patient View was suspended on Friday, this was just as a precaution in case there were further developments over the weekend.
RaDaR is held on a secure N3 server that has been fully security tested and is kept up-to-date with the latest security patches. The UK Renal Registry, who manage the daily operation of RaDaR, has Section 251 approval as an indication of our robust security and information governance policies and practices.
This particular breech was concerned with encrypting information to deny organisations access their files and to cause wide-spread disruption. It was not concerned with stealing patient data.
If you have any concerns about the security of RaDaR you can contact our technical team at:
The IgAN research group in Leicester has been given £2.7 million to establish the world’s first international registry of IgA Nephropathy patients. The registry will follow the same format as RaDaR and will collect clinically characterised data from IgA Nephropathy patients across Europe, Asia and South America.
University Of Leicester’s Press Release
The Spring Issue of the RaDaR Newsletter features the latest recruitment updates, details of an ADPKD research study and an advert for a forthcoming rare disease patient day in Birmingham.
The National Registry of Rare Kidney Diseases (RaDaR) recruited its 10,000th UK patient in January 2017. RaDaR is an initiative by UK kidney specialists (the Renal Association). It is designed to pull together information from patients who have certain rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research.
This work is done in partnership with patients. Where the research leads to practical benefits, such as better diagnosis, treatments or general advice this will be publicised on this website.
Further details about the registry can be found here.
Many thanks to the UK Renal Registry, the PKD Charity, British Kidney Patient Association and Kidney Research UK for supporting this valuable initiative.
It is a fantastic achievement and a testament to the hard work of all the renal units and Rare Disease Groups involved.
Congratulations and here’s to the next 10,000!