Ra RaDa DaR R Ra Rare re Re Rena nal l Di Dise sease ase - - PowerPoint PPT Presentation

Ra RaDa DaR R Ra Rare re Re Rena nal l Di Dise sease ase Re Regi gistry stry

Me Melanie nie Dillon RaDaR Project ject Facilitator tator

Ba Backgrou ckground nd

 The Nat

Nationa ional Regi Regist stry ry of

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Rare re Kidn Kidney ey Di Disea seases ses (RaD RaDaR) R) is a Renal Association initiative 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.

 RaDaR is managed by a series of Rare Disease Groups

consisting of experts in each condition.

 RaDaR began in 2009, recruiting paediatric patients

with Steroid Resistant Nephrotic Syndrome (SRNS) and Membranoproliferative Glomerulonephritis (MPGN)

 In 2012 it expanded to other conditions in paediatric

centres and then to adult centres in Autumn 2013.

 RaDaR now has UK-wide ethics approval for both adult

and paediatric recruits for 25 conditions.

Hi History story

Cu Curre rrent nt Re Recruit cruitment ment

 C3 Glomerulopathy  Adenine Phosphoribosyltransferase

Deficiency (APRT-D)

 Alport Syndrome  Atypical Haemolytic Uraemic Syndrome

(aHUS)

 Autosomal Recessive Polycystic Kidney

Disease (ARPKD)

 Bartters Syndrome  Dense Deposit Disease  Dent Disease  Cystinosis  Cystinuria  Epilepsy, Ataxia, Sensorineural deafness,

Tubulopathy Syndrome (EAST)

 Gitelman Syndrome  Hepatocyte Nuclear Factor-1 Beta

Mutations (HNF1B)

 Hyperuricaemic Nephropathy  Liddle Syndromes  Lowe Syndrome  Membranous Nephropathy  Membranoproliferative Glomerulonephritis

(MPGN)

 Medullary Cystic Kidney Disease  Pregnancy and Chronic Kidney Disease  Primary Hyperoxaluria  Shiga Toxin Associated Haemolytic

Uraemic Syndrome (HUS)

 Steroid Resistant Nephrotic Syndrome

(SRNS)

 Thin Basement Membrane Nephropathy  Vasculitis

Coming Soon

The following conditions will also soon be open for recruitment:

 IgA Nephropathy  Pure Red Cell Aplasia  Steroid Sensitive Nephrotic Syndrome

Cu Current rrent St Status atus of

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RaDaR DaR

 As of February 2015 there are:

 1,884 UK patients in RaDaR  Representing 24 conditions (all but APRT-D)  From 39 Renal Units  A further 24 units are in set-up

Oxalosis Recruitment

 There are currently:

 38 UK Oxalosis patients in RaDaR

 15 adults  23 children

 From 11 Renal units

Li Link nk wi with th Pa Patie tient nt Vi View ew

 RaDaR draws information from Patient View, an online

system which records renal patient’s results, medications and clinic letters.

 Recruited patients are given access to PatientView to

see their data online.

 The majority of renal units in the UK use Patient View.

Those that don’t can still take part in RaDaR but have to enter the patient’s data manually.

Da Data ta Ca Captu pture re - 1

 Generic pages of RaDaR provide minimal essential

data, the majority of which can be transferred automatically from PV.

 Condition specific pages are currently only available for

SRNS and MPGN patients, with the other conditions awaiting final verification.

 Current priority is to get patients consented and

registered within RaDaR. Follow-up data entry will be

• rganised at a later date.

Da Data ta Ca Capture pture - 2

In Information formation Se Security urity

 Data is encrypted and password protected.  Participants provided with a secure log-in to access

and check their own information via PatientView.

 Identifiable data only available to patient’s clinician and

unit administrator.

 Members of the Rare Disease Groups will only see

anonymised data – numbers rather than names.

Research Applications

 The two original RaDaR conditions – SRNS and

MPGN – have separate sub-studies involving genetic testing of patients and longitudinal data collection.

 Applications are currently being considered for clinical

trials using several of the RaDaR conditions including HUS and Primary Hyperoxaluria.

 As it develops RaDaR aims to link in with both industry

studies and other European Registries – including Oxal Europe.

Co Contac ntact t De Detai tails ls

Rare Disease se Manager ager (Governance, finance and set-up) Chrissie Jacobs 0117 323 8211 Christine.Jacobs@renalregistry.nhs.uk Projec ject t Facilitat tator

• r (Consent, data entry and general admin)

Melanie Dillon 0121 333 9233 Melanie.Dillon@bch.nhs.uk