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

Cystinosis Rare Disease Lead Advert

 

After over five highly successful years in the role, Dr Graham Lipkin is stepping down as lead for the Cystinosis Rare Disease Group and a replacement is now being sought.

This is a real opportunity to lead an enthusiastic group of clinicians, in partnership with patients and Industry, to support improvement in patient service, clinical care and research of an ultra-rare disease at an exciting time of drug development and change in service model.

Cystinosis Rare Disease Group Lead Advert