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
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.
Cambridge Clinical Trials Unit are looking to recruit patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) to take part in a research study looking at water intake.
The DRINK Study will randomly assign participants to either a daily prescription of high water intake or to continue with their usual drinking practices.
The aim is to determine whether it is possible and safe for people to drink enough water to stop vasopressin, one of the key hormones that drives cyst growth in PKD. The study also wants to see if participants can measure their own fluid balance, using a simple urine stick test that can be done at home.
If successful, the study will help researchers to design a larger trial to look at whether high water intake can affect long term kidney function.
The researchers also want to include families in the study. If you are interested or have any family members who would be happy to take part, please contact the study team as below for more information:
Telephone: 01223 349 844 E-mail: email@example.com
RD-Connect, NeurOmics and EURenOmics are hosting a rare disease outreach day on 3rd May in Berlin, Germany. The event aims to brimg together stakeholders from the rare disease community to share the value of the tools created and the knowledge generated through these projects.
Invitation to Outreach Day
Tuesday 28th February 2017 marks the tenth international Rare Disease Day. Hundreds of patient organisations from all over the world will be holding events designed to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The theme for 2017 is research. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
RaDaR and RareRenal.org are proud to support Rare Disease Day and the campaign to boost research into rare diseases.
Further details of the day and a list of worldwide events can be found at:
Thursday 9th March 2017 marks World Kidney Day (WKD) – an annual global awareness and education event.
This year the theme is Kidney Disease and Obesity.
Every year, countless local, national and international events are organised by kidney charities, healthcare professionals, patient groups and individuals.
We encourage everyone to get behind the campaign and try to organise an activity or event to draw public attention to the importance of kidney health – what can be done to protect kidneys before disease strikes, and to assist patients who already have chronic kidney disease.
Further details can be found at the World Kidney Day UK website:
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!