Patient Led Research Hub

SAVE

Selective removal of sFlt-1 in pregnant women with pre-eclampsia via apheresis

Action on Pre-Eclampsia expressed the need for new treatments for pre-eclampsia (high blood pressure during pregnancy). This idea aligned with an upcoming trial that proposed using special filters to remove a specific protein from the blood of pregnant women with pre-eclampsia. This protein is abnormally high in these women and can damage blood vessels. The first phase of this trial (NCT02923206) is actively recruiting, and will confirm if the filtering can be safely completed using a method similar to kidney dialysis. Dr David Jayne, University of Cambridge, is Principle Investigator and Miltenyi Biotec has provided funding.

National Renal Complement Therapeutics Centre

aHUSUK, a patient and family support group for those living with Atypical Hemolytic Uremic Syndrome (aHUS), surveyed their members for research priorities. Of major concern was the limited knowledge of predictors and treatments for complications following bone marrow transplant. aHUSUK and Leukaemia Care UK partnered up to address this issue, and we were able to connect them with researchers at the National Renal Complement Therapeutics Centre, Newcastle.

The Oliver Zangwill Centre

An individual patient with dysexecutive syndrome contacted us through the Cambridge BRC PPI Panel. The proposer was very interested in improving early diagnosis, and we were able to connect them with ongoing research at The Oliver Zangwill Centre, Cambridge.

Rehabilitation and Sport Sciences, University of Bournemouth

An individual patient with chronic low back pain was interested in the progression from acute injury to chronic (long-term) pain. They were also keen to explore how the dialogue between patients and healthcare providers can influence rehabilitation. The Chartered Society for Physiotherapy (CSP) referred us to Prof Carol Clark, CSP Research Lead in Pain and Musculoskeletal Physiotherapy, and Head of Department for Rehabilitation and Sport Sciences at Bournemouth University. Prof Clark leads an active research team within this field, and was pleased to collaborate with such a motivated patient.

TAR:GET-1

Transplant antibody-mediated rejection: guiding effective treatments

The British Kidney Patient Association, UK Transplantation Clinical Study Group and the James Lind Alliance Transplant Priority Setting Partnership highlighted the need for more research on renal transplant rejection. This idea aligned with a clinical trial proposal to assess the efficacy of available treatments for acute antibody-mediated rejection in renal transplantation. TAR:GET-1 (NCT03994783) began as a UK multi-centre randomised controlled trial funded by Kidney Research UK and NIHR Health Technology Assessment Programme. Unfortunately, the trial had to be halted during covid-19, because it was unsafe to give immunosuppressants to vulnerable patients. For various reasons, the research team subsequently decided not to re-open TAR:GET-1 in 2022.