Automatic data transfer for RaDaR
Automatic data transfer has now been enabled for selected RaDaR data fields. Medications and the majority of the Results tabs will now be auto-populated from Patient View (PV), via the UK Renal Data...
View ArticleKidney Animation
Although the conditions covered by RaDaR are rare, kidney health is important to everyone. Our partner website Think Kidneys have produced a brilliant animation on ‘Almost Everything you need to Know...
View ArticleYoung Nephrologist’s Pregnancy and Kidney Disease Course
The ERA-EDTA’s Young Nephrologists’ Platform (YNP), are hosting a course on Pregnancy and Kidney Disease in Lisbon, Portugal on 22-23 September. The course is accredited with 10 European CME credits...
View ArticlePregnancy and Kidney Disease Patient Day
The Pregnancy and CKD Rare Disease Group are holding a Patient Information Day on Friday 30th September 2016 at Arlington Conference Centre, 220 Arlington Road Camden, London, NW1 7HE, from 9.30 –...
View ArticleRaDaR Newsletter
The latest edition of the RaDaR Newsletter contains important information about connecting RaDaR recruits to Patient View in order to ensure automatic data transfer, as well as the latest recruitment...
View ArticleInfoKID Survey
InfoKID.org.uk is an online resource providing information on almost 50 topics relating to kidney conditions, treatment and tests and diagnosis. A 10-minute survey has been created for users to provide...
View ArticleNew Recruits Needed for the UKRR Patient Council
The UK Renal Registry, who oversee RaDaR and RareRenal.org, want to ensure that patients are at the heart of everything they do. Over the last two years they have established a Patient Council and are...
View ArticleRaDaR Patient Leaflet
A new patient-focused leaflet is now available to advertise RaDaR to patients and family members.
View ArticleRaDaR opens for Fibromuscular Dysplasia recruitment
The RaDaR Rare Disease Registry is now open to Fibromuscular Dysplasia patients. No additional approvals are needed to recruit these patients. The inclusion criteria for Fibromuscular Dysplasia...
View ArticleADPKD research study
Cambridge Clinical Trials Unit are currently conducting a study called DRINK, looking at high water intake in ADPKD patients. For more information please click here or e-mail add-tr.drinktrial@nhs.net
View ArticleGitelman & Bartter Syndrome Patient Information Day
The third Gitelman and Bartter Syndrome Patient Information Day will be held on Saturday 3rd December 2016 at Resource for London, 356 Holloway Road, London, N7 6PA, from 10.30 – 4.00pm. For further...
View ArticleCondition-specific data-entry instructions
Detailed condition-specific data-entry instructions for RaDaR are now available. These can be found under the green cohort tab once a patient has been registered. The full list of instructions is also...
View ArticleRaDaR opens for Fabry Disease recruitment
The RaDaR Rare Disease Registry is now open to Fabry Disease patients. No additional approvals are needed to recruit these patients. The inclusion criteria for Fabry Disease patients can be found here....
View ArticleRaDaR Newsletter
For the latest RaDaR recruitment figures and information on forthcoming patient information days please see the latest edition of our Newsletter
View ArticleMidlands Rare Disease Showcase presentations
Video presentations from the recent Midlands Rare Disease Showcase are now available via You Tube, including a talk on RaDaR and one on aHUS. Thanks goes to FindACure for the filming and editing of the...
View ArticleChildren and young people rare disease network
The RCPCH & Us youth network, the British Paediatric Surveillance Unit, and Birmingham Children’s Hospital are looking to engage the views children and young people (CYP) living with or affected by...
View ArticleRaDaR opens for Tuberous Sclerosis recruitment
The RaDaR Rare Disease Registry is now open to Tuberous Sclerosis patients. No additional approvals are needed to recruit these patients. The inclusion criteria for Tuberous Sclerosis patients can be...
View ArticleNew 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...
View ArticleRaDaR 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...
View ArticleRaDaR Newsletter, Summer 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...
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