A Primary Hyperoxaluria Clinician’s Meeting was held at Birmingham Children’s Hospital on Tuesday 3rd March 2015. The event had a specific research focus and was attended by both adult and paediatric Nephrologists working in the field, a hepatologist and other healthcare professionals with an interest in Primary Hyperoxaluria. Kim Hollander from the OHF was also in attendance.
Presentations were given from two pharmaceutical companies – Alnylam and Dicerna – who are both proposing Phase 1 clinical trials with PH1 patients using RNA interference techniques to block glyoxylate oxidase.
The event also included a presentation on the current status of RaDaR, the Rare Renal Disease Registry, and an update from Professor Bernd Hoppe on the OxalEurope Primary Hyperoxaluria Registry.
Details of pre-operative and perioperative haemofiltration and haemodialysis were discussed with a view to include some guidance on this for transplanting centres.
Discussions regarding the prioritisation of PH patients on the UK liver transplant waiting list were highlighted to Kim Hollander of the OHF. She intends to assist our team in lobbying the BTS regarding this matter.
Following the success of the last Primary Hyperoxaluria Patient Information Day, which was held in Birmingham in April 2013, a further event is being planned for Leeds later this year. Full details will follow shortly with a proposed date of 14th November 2015. It is likely that a physician update will be held simultaneously.
Copies of two of the presentations are now available to download in PDF format.
The European Hyperoxaluria Consortium Primary Hyperoxaluria Registry – Professor Bernd Hoppe, University of Bonn, Germany.
RaDaR Rare Renal Disease Registry – Melanie Dillon, RaDaR Project Facilitator, Birmingham Children’s Hospital.