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 2011/12 using the new Renal Rare Disease Registry (Radar) infrastructure. This will benefit both patients themselves (info and contacts) and clinicians (expert opinion, guidance, updating, testing access). 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. Further information to follow.
Atypical HUS (aHUS)
A national registry is being created 2011/12, as for Alport Syndrome. Tim Goodship (Newcastle) is UK lead. Newcastle is also able to undertake genetic and laboratory testing and has applied to become a national treatment centre. Further info to follow.
Bartter/Gitelmann syndromes
A national registry is being created 2011/12, as for Alport Syndrome. Fiona Karet (Cambridge) is UK lead. Further info to follow.
FSGS
Patients with a diagnosis of FSGS within the last 12 months and Alb <30 and BP <125 despite ACEi may be eligible to join GloMy, in which high dose steroids are compared with Myfortic and short course of steroids. Local contact: David Kluth.
Genetic conditions
ANT has started keeping 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
Adults with .... (further info to follow). Recruiting late 2011. Local contact: John Neary
IgA nephropathy
Patients with IgA nephropathy and Alb <30 OR Oxford score E1 and T<2; and BP <125 despite ACEi may be eligible to join GloMy, in which Myfortic and a short course of steroids is compared with conservative therapy. Local contact: David Kluth.
Interstitial nephritis
Two UK-wide simple one-visit genetic studies initiated by gastroenterologists are seeking subjects:
- 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
- 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.
Other studies are under consideration.
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.
- Alport - see above
- Atypical HUS (aHUS) - see above
- ARPKD - pending
- Bartter/Gitelmann - see above
- Cystinosis - approved and recruiting
- Dense deposit disease - recruiting but not yet open to all centres
- HNF1b mutations - approved
- Hyperoxaluria (primary) - pending
- Steroid-resistant nephrotic syndrome of childhood (paediatrics only)
- UMOD mutations - pending
Vasculitis
Various projects under the auspices of EUVAS, the European organisation for trials in vasculitis. Lontact David Kluth about any new vasculitis patient to see whether they may be eligible.
Some previous clinical trials in Edinburgh
Listing some of the trials that we have participated in:
- TEMPO - RCT of Tolvapatan (ADH receptor antagonist) for polycystic kidney disease. Reporting late 2012.
- MRC-KRUK Membranous Trial - alkylating agents are more effective than cyclosporine or conservative therapy.
- Glomerulonephritis DNA bank - multiple papers now arising 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.
Downloads
| Thrombosis prophylaxis << | >> UTI |
