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RADAR

RADAR. Started recruiting May 2010 2 pilot groups, SRNS and MPGN Website design Patient/clinician information Research information (Management protocols) (clinical timelines – graphical) (ability to generate clinic letters, discharge summaries) 310 pts to date. RADAR.

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RADAR

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  1. RADAR • Started recruiting May 2010 • 2 pilot groups, SRNS and MPGN • Website design • Patient/clinician information • Research information • (Management protocols) • (clinical timelines – graphical) • (ability to generate clinic letters, discharge summaries) • 310 pts to date

  2. RADAR • 12 disease specific data entry pages • MCRN approval for SRNS, non-meds CLRN approval for MPGN • 2/3 of paeds consultants active users

  3. RADAR - visibility • Publicly marketed to BAPN, Renal Association • Editorial BMJ • Visited and talked to each UK unit • Affiliated to Rare Disease UK • Invited review PedNeph • Invited to NEPTUNE meeting in USA • Joint UK/US/India partnership • NephCure (US charity)

  4. SRNS • 220 patients • DNA and plasma repository • Next Generation Sequencing study • 3 PhD projects • First publication in CJASN • Simultaneous sequencing of 24 genes associated with steroid resistant nephrotic syndrome, harnessing Next Generation Sequencing. Hugh J McCarthy, AgnieszkaBierzynska, Matt Wherlock, MilosOgnjanovic, Larissa Kerecuk, ShivaramHegde, Sally Feather, Rodney D Gilbert, Leah Krischock, Caroline Jones, Manish Sinha, Nicholas Webb, Martin Christian, Stephen Marks, AniaKoziell, Gavin I Welsh, Moin A Saleem on behalf of RADAR and the UK SRNS study group • Funding to extend to adult patients • Clinical genetics test being developed and approved for SRNS

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