at , Bristol, BS10 5NB United Kingdom
RareRenal provides patient and clinician information on rare kidney diseases that are eligible for inclusion in the RaDaR rare disease registry.
The National Registry of Rare Kidney Diseases (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 the patient and clinician information website www.rarerenal.org.
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The Cystinuria UK website provides clear and concise information for cystinuric patients and/ or their friends and family. https://sites.google.com/site/cystinuriauk
Cystinuria is an inherited condition that causes kidney stones and affects approximately 1 in 2,000 people in the UK. #raredisease
The top recruiting sites overall are: Stevenage - 346 Nottingham - 318 Stoke - 308 Birmingham Children’s - 284 Glasgow - 267
The top recruiting sites for RaDaR in June 2016 were: Coventry - 99 recruits Glasgow Queen Elizabeth - 58 recruits Norwich - 38 recruits Liverpool Royal - 31 recruits Hull - 29 recruits
The Medications and Results tabs in RaDaR can now be auto-populated via Patient View
Kings College Hospital, London, Royal Liverpool Hospital and University Hospital Crosshouse, Kilmarnock recruited their first patients in June 2016. Welcome on board everyone!
As of 1st July there are 5,910 patients in RaDaR, from 69 renal units. There were 527 new patients in June - our best month ever!
The Pregnancy and CKD RaDaR cohort now includes women with CKD stages 1 and 2.
It's accrual day for RaDaR today and we had a brilliant month in June with over 500 new patients recruited! The full breakdown will be available next week.
The Cystinosis Rare Disease Group have written an Information Prescription for patients with Cystinosis. The full document can be download from the link below.
The Cystinosis Life website features four young patients telling their stories in their own words. Topics covered include friends and family, everyday life and transition to adult services. http://cystinosislife.orphan-europe.com/
@CystinosisFoundationUK supports individuals, families and researchers in the Cystinosis community.
This week's focus is on Cystinosis, a rare inherited condition which causes a build-up of an amino acid called cystine. This can cause crystals to develop in the eyes and kidneys.
Two of our Rare Disease Group Leads - Drs Sally Hulton and Larissa Kerecuk - starred in last night's touching Birmingham Children's Hospital documentary on Channel 4. #childrenshospital
A new Rare Disease Group has recently been approved – Fibromuscular Disease. Their Patient and Clinician Information pages are currently being written and they will open for recruitment to RaDaR shortly.
For paediatric patients the period of consent for RaDaR is capped at 18 years. Upon transition to adult care, paediatric renal units should ask the receiving adult unit to re-consent the patient as an adult.
Health Research Authority (HRA) approval is not needed for the new RaDaR amendment as we're classed as a research registry rather than a clinical trial. http://www.hra.nhs.uk
If you have any queries about the new postal consent admendment for RaDaR please contact firstname.lastname@example.org
Patients can now be consented to RaDaR by post, following a successful amendment submission the South West-Central Bristol Research Ethics Committee. The new consent documents can be downloaded from the ink below.
There are currently 14 Calciphylaxis patients in RaDaR - do you have anyone in your renal unit that you could recruit?
The latest news from NeST - the Nephrotic Syndrome Trust - can be found at bit.ly/NeSTJune16
The UK Calciphylaxis Study also provides information for Healthcare Professionals - http://bit.ly/Calciphylaxis-HP
Calciphylaxis is one of the newer RaDaR condtions. Patient information is avalaible via the UK Calciphylaxis Study website - http://bit.ly/Calciphylaxis
The staff, patients and families of Birmingham Children's Hospital, our top paediatric recruiter for RaDaR, are the stars of a fascinating new documentary series which started on Channel 4 last night. If you missed it, be sure to watch On Demand.