RaDaR
@RenalRadar
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The largest rare kidney disease registry in the world. A powerful source of real-world data that can help improve understanding of rare kidney conditions.🧬
England, United Kingdom
Joined March 2016
🎉Join @NSTrust 20th Birthday Celebration!🎉. Taking place at their research labs in📍Bristol, the day will celebrate the milestone year & the team's research success. 🍽️Lunch & refreshments.👩🔬Hear the latest research updates.🔬Lab tours. More info:
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Don't miss the Alport Research Hub Symposium co-chaired by RaDaR's @DannyGale_1. Hear updates on the Hub's latest research, data projects & future plans. Open to all, whether you already work in AS or are interested in developing research. Register now:
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RT @ISGDtweets: Prof. Daniel Gale enlightens how studying large cohorts allows for deeper understanding and gap closing in rare diseases 🔑….
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🧬New RaDaR data at #ERA2025 offer detailed longitudinal analysis of kidney function decline in #Alport syndrome, reinforcing the prognostic role of genotype & proteinuria control. RaDaR's @DannyGale_1 discusses the results in this @HCPLiveNews interview:
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RaDaR researchers are sharing new findings at #UKKW25 on kidney outcomes in Alport syndrome & the challenges of scaling up real-world rare disease registries. Join us in Bournemouth to see how data is changing care for people with rare kidney diseases.
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📊 RaDaR data in action at #UKKW25:. ✅ eGFR slope in Alport syndrome.✅ Proteinuria & kidney outcomes.✅ Scaling up real-world rare disease data. Catch these posters presentations on Wednesday 11 June. 🗓️ Full programme:
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📸 Highlights from today's #RaDaR15 celebration event:. 🎤 Q&A with Danny Gale & Kate Bramham + talks & discussions .🧬 Groundbreaking research.🤝 Patient voices & charities.🎖️ Our limited-edition 15-year pins.So many reasons to feel proud today. Thank you to all who joined!
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RT @KNewmanPhD: On my way to the @RenalRadar 15 year celebration event, really looking forward to these fantastic talks and meeting/catchin….
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📢 New paper published!. The study explores how nephrotic syndrome progresses & the link between proteinuria & kidney failure risk. 🔍 Insights will help clinicians identify higher risk patients earlier & improve clinical trial design. Read more 👉
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Patients with rare kidney diseases account for 5–10% of people with CKD, but make up > 25% of those receiving kidney replacement therapy. Addressing unmet needs for these patients could positively impact long term KRT demand. Read the full article:
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197 observation types including 176 rare conditions & 33 rare disease groups. These RaDaR discoveries provide valuable information for research & clinical trials, all helping to improve our understanding of rare kidney disease. Explore the groups here:
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How accurate is RaDaR's data? . We work closely with kidney centres & laboratories across the UK to ensure data is accurate & up-to-date. We're also working with centres to get important genetic test results & specific blood markers to enrich our data.
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ADTKD is considered a ‘silent’ condition as the kidney damage it causes typically shows no symptoms until severe. It is often diagnosed by chance in blood tests. With no direct cure treatment focuses on managing symptoms. Learn more about our ADTKD RDG:
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RaDaR has collected over 40.5 million observations since its formation in 2010. That's approximately 450,000 results per month. This vast source of real-world data is advancing our understanding of rare kidney conditions. Find out more:
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The RaDaR team are looking forward to presenting abstracts at UK Kidney Week this June!. Last year saw 3 from RaDaR with topics including Idiopathic Nephrotic Syndrome & MPGN. Join us at #UKKW25 for the latest data insights in rare kidney diseases! . 👉
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Alport was one of the 1st Rare Disease Groups when RaDaR was established 15 years ago. The group has had major successes with valuable results from data on 1000+ Alport patients recruited to RaDaR – an internationally recognised achievement. Read more:
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RaDaR recently achieved a milestone having reached 35,000 registered patients!. This number is significant to us - we can harness this data to increase our understanding of rare conditions which are typically difficult to research. Read more about RaDaR:
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🔢RaDar by numbers 🔢. Our latest facts of figures as we reach 35,000 registered patients. We're proud to be the largest registry of its type in the world!🌍. Is your unit already involved?. Explore more, including recruitment resources:
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“These types of insights – the ones that you can only really get from large cohorts - are really valuable” . @DannyGale_1 discusses how RaDaR can support projects like PARASOL with longitudinal data. Listen to the full episode of #KidneyCompass now:.
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