Expressions of interest for new guidelines

 

We are seeking expressions of interest for Renal Association Members to write new guidelines on the following topics:

  • Medical management of stone disease
  • Pregnancy and renal disease

To apply, please send a statement of no more than one side of A4, explaining why you would like to do this, along with a completed Conflict of Interest Form to Melanie.Dillon@renalregistry.nhs.uk by Tuesday 23rd November.

15,000th RaDaR patient recruited!

 

The 15,000th UK RaDaR patient was recruited on the 10th October 2017. This is a fantastic achievement and a testament to all the hard work and support that the 87 currently recruiting hospitals have given to the project over the years. Many thanks to you all.

RaDaR Ethics Amendment Approved

 

The latest RaDaR amendment has now been approved by Ethics. 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 also allows for data linkage to other registries, including the Hospital Episode Statistics (HES) and Office for National Statistics (ONS) databases. This will enable 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.

Copies of the new documents have been sent to all current sites and are also available from the Criteria and Consent page.

If you have any queries about the amendment please contact Melanie.Dillon@RenalRegistry.nhs.uk

RaDaR Ethics amendment submitted

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

Primary Hyperoxaluria Webinar, 15th August

 

 

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

Speakers

• 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

Participate

Questions

Ask a question by emailing: julieb@ohf.org (subject line: Dicerna Webinar) by Sunday, August 13, 2017.

RaDaR Update following NHS Cyber Attack

 

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:

nbn-tr.radar@nhs.net

New Website Design

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.