On Monday 2nd September 2019 a joint patient and clinician event was held at in London to discuss current and future research around the RaDaR rare disease registry, as well as ways to boost patient engagement in research.
The agenda, a report from the day and pdfs of the presentations can be found below.
Presentations
Current status of RaDaR – Melanie Dillon, RaDaR Operations Officer
Ethics and re-consent – Dr Kate Bramham, Rare Diseases Committee Deputy
ADPKD – Dr Regada El-Damanawi, Research Fellow
NephroS/NURTuRE – Prof Moin Saleem, Paediatric Nephrologist, Bristol
PREDICT – Dr Kate Bramham Rare Diseases Committee Deputy Chair
ERKNet – Tess Harris, PKD Charity
NIHR BioResource – Dr Kathy Stirrups, Head of Sample Management
NCARDRS – Mary Bythell, Head of Rare Disease Registration
NHS Digital – Jackie Shears, Associate Director, Data Acquisitions
Patient Council and information resources – Fiona Loud, Kidney Care Policy Director
Kidney Research UK support – Pete Storey, KRUK Rare Disease Programme Lead
