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Alphabetical list of conditions | Rare diseases | Previous studies | Downloads

Who is Eligible?  Clinical trials and research studies currently active in Edinburgh arranged by who is eligible.  It shows only studies in which nephrology is initiating entry.  We aim to produce a similar, separate page for transplant studies in due course.  www.edren.org/trials is a shortcut to this page.  Contact renal@ed.ac.uk with additions or corrections. 

Alport syndrome

A national registry is being created using the  Renal Rare Disease Registry (Radar) infrastructure.  This will benefit both patients themselves (info and contacts) and clinicians (expert opinion, guidance, updating, testing access).  Further information about the Alport RDG. Please ensure that all patients have the Alport EDTA diagnostic code (51) entered in Proton (11th field in Diagnosis screen adjacent to Patient Details), even if they are not RRT-requiring.  This will make it easy to identify candidates.  Neil Turner (Edinburgh) is UK lead for this group and the local contact.  

Genetic conditions

ANT keeps a log of patients with inherited single-gene disorders, whether or not you have identified a mutation.  Please send him details if you spot one, whether or not it is listed on this page. 

Hyponatraemia

An Otsuka-sponsored study of patients with hyponatraemia has finished recruiting.  Local contact:  John Neary

IgA nephropathy

Patients with IgA nephropathy and proteinuria over 50mg/mmol despite ACEi may be eligible for entry into NEFIGAN, in which a delayed release preparation of budesonide is being compared with placebo.  Local contact: Fiona Duthie or Neil Turner.

Interstitial nephritis

Two UK-wide simple one-visit genetic studies initiated by gastroenterologists are seeking subjects:

  1. Mesalazine in IBD - a genetic study that requires just one visit for DNA and data collection is under way.  Enrolling late 2011, please send potential names to local contact: Neil Turner
  2. PPI-induced acute interstitial nephritis - not yet recruiting, but proposed along the same lines as the Mesalazine study and by the same GI group.  Please send potential names to local contact: Neil Turner

Minimal change nephrotic syndrome - MinTac

Adults with a new (first) diagnosis of minimal change disease are eligible. Randomised to tacrolimus or conventional high-dose prednisolone, with end-point of recurrence rate, aiming to show non-inferiority of the CNI with reduced side effects.  Multicentre led by Megan Griffith, West London.  Local contacts: Neil Turner, John Neary.  2011.  Documents at foot of this page

Polycystic kidney disease

PKD UK Registry - it is hoped that a UK-wide PKD registry will be developed analagous to that proposed for Alport Syndrome (see above).  Please ensure that all patients have the PKD EDTA diagnostic code (41) entered in Proton (11th field in Diagnosis screen adjacent to Patient Details), even if they are not RRT-requiring.  This will make it easy to identify candidates.  Further information to follow.  

Overture is an observational study that includes MRI measurement of kidney volumes over a period of years.  It is fully recruited now; we have enrolled 15 patients towards the worldwide total of 3000.  The study sponsored by Otsuka.  Local contacts:  Madeleine Vernon, Neil Turner.  NT is UK lead investigator for this study.

Tempo was an interventional RCT with Tolvaptan.  Patients who were in the original study continue in an unblinded extension study with all patients receiving active drug and further annual monitoring of kidney volume by MRI.  Local contacts:  Madeleine Vernon, Neil Turner. 

Other rare diseases

Rare disease groups under the umbrella of the Renal Assoc/BAPN Rare Disease Committee have been or are being created on the following conditions during 2012.  Most of these are being set up as simple Registries with advice available to clinicians and patients, so no ethics etc required.  Only one or two have research projects attached at present. A full list and further info can be seen at rarerenal.org

  • Alport - see above
  • Atypical HUS (aHUS)
  • ARPKD
  • Bartter/Gitelmann
  • Cystinosis
  • Dense deposit disease and MCGN
  • HNF1b mutations
  • Hyperoxaluria (primary)
  • Membranous nephropathy
  • Pregnancy in renal disease
  • STEC-HUS
  • Steroid-resistant nephrotic syndrome of childhood (paediatrics only)
  • UMOD mutations
  • Primary vasculitis

Vasculitis

Various projects under the auspices of EUVAS, the European organisation for trials in vasculitis.   Contact David Kluth about any new vasculitis patient to see whether they may be eligible. 

Some previous clinical trials in Edinburgh

Listing some clinical trials that we have participated in:

  • TEMPO - RCT of Tolvapatan (ADH receptor antagonist) for polycystic kidney disease.  It works. 
  • MRC-KRUK Membranous Trial - alkylating agents were more effective than cyclosporine or conservative therapy.
  • Glomerulonephritis DNA bank - multiple papers have arisen from this.
  • ASTRAL - stenting for Renal Artery Stenosis.  Stenting didn't improve outcome
  • SHARP - cholesterol-lowering in CKD - it's worth it.
  • EUVAS trials in vasculitis - see EUVAS
  • Endothelin antagonists in CKD - they lower blood pressure and proteinuria in short term studies

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This page last modified 18.02.2014 14:52 by Emma Farrell. edren and edrep are produced by the Renal Unit at the Royal Infirmary of Edinburgh and the University of Edinburgh. CAUTIONS and Contact us.