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UK Renal Registry Annual Audit 2013

UK Renal Registry Annual Audit 2013. Tess Harris CEO, PKD Charity. ADPKD patients in the UK. Two gene mutations - PKD1 and PKD2 No discrimination on UKRR Adult ADPKD patients starting RRT between Jan 2000 and Oct 2010: Median age of commencing RRT was 55 years (47-63)

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UK Renal Registry Annual Audit 2013

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  1. UK Renal RegistryAnnual Audit 2013 Tess Harris CEO, PKD Charity

  2. ADPKD patients in the UK • Two gene mutations - PKD1 and PKD2 • No discrimination on UKRR • Adult ADPKD patients starting RRT between Jan 2000 and Oct 2010: • Median age of commencing RRT was 55 years (47-63) • Not changed in 10 years • The majority likely to have PKD1 - but we don't know for sure

  3. Genkyst Registry Study (France) • Over 1000 adults – all genotyped: • PKD1 - ESRD median age 57.9 years • PKD2 - ESRD median age 79.7 years • PKD1 mutation subdivision: • Truncating PKD1 mutation - ESRD 55.6 years • Non-truncating mutation - ESRD 67.9 years • 24 year spread by genotype • Implications for management and therapies and registries?

  4. ADPKD and Tolvaptan and UKRR • Tolvaptan global clinical trial (Phase III): • Lower rates of worsening kidney function • Lower rates of pain • Global marketing authorisation assessment • NICE scoping • UKRR Annual Audit 2023: • Genotyped patients? • Improvement in median age of ESRD?

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