Following a review of our revised consent documents by NHS Digital, we have just submitted the latest RaDaR amendment to the South West – Central Bristol Research Ethics Committee.
The main changes concern clarification that RaDaR consent covers Patient View Sign-up, subject to local availability, and that patients consent to being contacted directly by a member of the central RaDaR team and/or their Rare Disease Group Lead regarding information events or further research studies.
The 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.
No action is required on behalf of the sites at present. We will everyone informed as to the progress of this amendment and let you know when it is approved.
If you have any queries about the amendment please contact Melanie.Dillon@RenalRegistry.nhs.uk
The Oxalosis & Hyperoxaluria Foundation (OHF) and Dicerna Pharmaceuticals invite you to participate in a webinar on Tuesday, August 15, 2017 at 16.00 hours GMT to discuss research presented by Dicerna during the 12th International Workshop on Primary Hyperoxaluria in Tenerife, Spain in July.
At the meeting, Dicerna announced the expansion of its drug development programs to encompass all forms of primary hyperoxaluria (PH). Based on new pre-clinical data presented in Tenerife, the investigational therapy DCR-PHXC has the potential to treat all forms of PH.
The webinar will provide an overview of the following research topics:
• The need for new treatment strategies for all types of PH
• The role of the LDHA gene in the pathogenesis of PH
• The DCR-PHXC preclinical data demonstrate potent, durable, and precise knockdown of LDHA in animal models of PH1, PH2 and idiopathic PH, and show a simple, direct linear relationship between LDHA inhibition and oxalate production
• Clinical development plans and timelines for DCR-PHXC
• Kim Hollander, Executive Director, Oxalosis & Hyperoxaluria Foundation
• Dr Sally-Anne Hulton, M.D. Paediatric Nephrology, Birmingham Children’s Hospital UK
• Ralf Rosskamp, M.D. Chief Medical Officer, Dicerna Pharmaceuticals
Ask a question by emailing: email@example.com (subject line: Dicerna Webinar) by Sunday, August 13, 2017.
The Summer issue of the RaDaR Newsletter features updates from the IgA Nephropathy and aHUS groups, details of a Cystinosis patient information event in Birmingham and important information about the forthcoming Ethics amendment.
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:
Welcome to the newly re-designed RareRenal.org. Following a lengthy consultation process we have re-designed the site to allow for a cleaner navigation and more intuitive user journey. This includes a new logo, more prominent social media links and the option for patients as well as clinicians to sign up for our Newsletter advertising information events and further research studies.
We would welcome feedback on the new design via our Contact page.