Research and Education Funded by Vasculitis UK
Education Funding for Spring 2019
Travel Bursaries have been awarded to six applicants who are attending the 19th International Vasculitis ANCA Workshop, April 7-10th 2019 in Philadelphia, PA
Rare Disease Group Vasculitis Education Day May 2019
Presented by Dr Nina Brown and Dr Fiona Pearce at Salford Royal, sponsored by UKIVAS and supported by Vasculitis UK. Details here
Education Funding for Summer 2018
Vasculitis U.K. and the British Society for Rheumatology are working together to offer 5 “Vasculitis Fellowships”. Successful applicants will experience 3 days of intensive education about all types of vasculitis and will get first hand practical experience working in clinical sessions with a leading expert in vasculitis.
Research Funding Autumn/Winter 2017
- Dr Rachel Jones University of Cambridge. Study entitled " Tissue Biopsy study in ANCA associated Vasculitis ", £40,750 over 12 months
- Prof Alan Salama University College London, Centre for Nephrology ,Royal Free Hospital, Study entitled " Investigating the aetiology of Subglottic stenosis in GPA using novel in vitro models ", £42,578 over 24 months
- Dr Louise Oni, University of Liverpool. Study entitled "Working towards a diagnostic test to enable stratification of children with IgA Vasculitis (HSP)", £21,222.95 over 12 months
- Dr Despina Eleftheriou, Institute of Child Health, University College London. Additional funding of £8560 for the Grant we funded last year entitled "Discovering novel genetic causes of cerebral vasculitides of the young"
- Dr Theresa Page, Imperial College London. Study entitled "Does the calprotectin: RAGE axis contribute to pathogenesis in ANCA associated Vasculitis?" £12,000 over 12 months
Travel Bursaries, March 2017
- Vasculitis UK has funded five professionals to travel to the International Vasculitis ANCA Workshop in Japan. Details here
- Primary Angiitis of the Central Nervous System.
- Dr Desmond Kidd;The Royal Free London (ucl)
Duration 36 months
- Discovering Novel Genetic causes of Cerebral Vasculitides of the young.
Prof Paul Brogan and Dr Despina Eleftheriou; Great Ormond Street Hospital.
Commencing October 2016
- Improving early diagnosis of Wegeners Granulomatosis ( GPA ) in primary care.
Prof Richard Hubbard and Dr Fiona Pearce; University of Nottingham.
Duration 12 months
- Management of fatigue in Large Vessel Vasculitis and its overlaps: a feasability study.
Dr Sarah Mackie and Dr Emma Harris; University of Leeds.
Duration 12 months
- SYK as a novel therapeutic target in systemic ANCA associated vasculitis.
Dr Stephen Mackadoo and Dr Ivor Kwame; Imperial College, London.
Duration 12 months
- BPSU study on Behcets Syndrome in children and young people in the UK.Dr Clare Pain and Prof Micheal Beresford; University of Liverpool.
Duration 36 months
- The informational needs of carers for people diagnosed with ANCA associated vasculitis.
Dr Richard Watts and Dr Janice Mooney; University of East Anglia.
Duration: 12 months
- Micro-RNA (Genetic Regulators) - March 2014 - V-UK is part funding a pilot study to be carried out by Dr Nina Brown, of Manchester University Hospital. It is hoped to establish whether "micro-RNA" particles can be found in blood plasma in different levels according to whether the disease was active or in remission and if these particles can also been detected in the urine.
If there is found to be a correlation and the particles are also found in urine, it might be the key to a new biomarker for disease activity, thus aiding diagnosis and monitoring of maintenance. In addition it might lead to new drug therapies that would reset the immune system.
If the theory proves correct, it would lead to a much larger clinical trial to produce some hard clinical evidence in statistically significant numbers.
The majority of the funding for this pilot study is being met by the Manchester Renal Research Fund.
Research Funding Autumn 2016
Research Funding Spring 2015 - Spring 2016
Research Funding 2011-2014
- GENVAS - June 2013 - For details about the GENVAS project and V-UK funding of this research study, please see "UK Vasculitis Registry and GENVAS" below.
- MYPAN Research Project - Spring 2013 - The Trustees of Vasculitis UK are very pleased to be associated with and part funders of this international trial, which is being led by Dr Paul Brogan of Great Ormond Street Hospital for Children and University College, London.
The investigation is into the relative effectiveness of Mycophenolate in treating PAN (Polyarteritis Nodosa) in children. This is a rare condition, especially in children, hence the need to make it an international collaborative study involving other centres throughout Europe. In research terms, you need to have numbers of participants to make the results meaningful and significant.
The standard treatment for PAN is with an aggressive immune suppressing drug - Cyclophosphamide. As we all know, although it is very effective, cyclo has numerous undesirable side-effects. For children these are potentially so much more serious. Mycophenolate is also very effective but has fewer serious side-effects. So if Mycophenolate is found to be at least as effective as Cyclophosphamide in controlling PAN in children, they would be spared those side effects, as the known side effects of this drug are relatively mild.
The main funding for this research study is being provided by Arthritis UK, but they will only fund the UK part of the project. The other participants in this Europe-wide study are paying their own basic costs, but participation also involves approval by the different regulatory bodies in each country involved. This is a complex and time-consuming process which can be expensive.
Vasculitis UK is providing £15k to help in funding this part of the project. If the trial proves to be successful, children suffering from PAN throughout the World may be safely spared the harmful effects of Cyclophosphamide.
- UKIVAS Vasculitis Registry and GENVAS - Spring 2013 onwards - Vasculitis UK is very proud to be associated with these two very important research based projects and to be funding them.
The Vasculitis Registry is a database of clinical information about vasculitis patients in various centres around the UK. Vasculitis UK support is a five year funding strategy for the new UK and Ireland Vasculitis Registry from March 2013. This is an initiative of the United Kingdom and Ireland Vasculitis Study Group (UKIVAS) and is led by Professor Mark Little, of Trinity College Dublin and Dr Richard Watts, Consultant Rheumatologist at Ipswich.
Full information can be found at: Rare.Renal.Org
For further information on Trinity College Dublin see: Trinity Health Kidney Centre
Membership of UKIVAS is made up of the top UK and Irish experts dealing with the vasculitides.
The new Registry will store clinical data from numerous centres all around the UK. This will permit researchers to investigate, for example, the effectiveness of different treatment regimes in a large cohort of patients, especially long term results, as well as the investigation of genetic factors. It will aid the search for more reliable indicators of disease activity, thereby improving diagnosis and will help identify the model for best practice in treatment
Until now, in the UK there has been no central database, no co-ordinated system for recording, collecting and sharing this information. Each hospital has its own system, making it very difficult for those involved in clinical research to find out lots of potentially useful information about, for example, how the various types of vasculitis affect different patients, how they respond to different medication, how long before relapse, the side effects of drugs, permanent effects of the vasculitis – and so much more.
Now, numerous centres around the UK have agreed to "donate"the data that they have on their vasculitis patients, both past present and future, to this new database in a format that will be accessible. Once there is sufficient data added it will become an incredibly valuable resource for those involved in vasculitis clinical research. As researchers will "buy" the information from the database, it will become self-funding. As the database grows it will become ever more valuable as a research tool.
GENVAS is a project that sits alongside the Registry. It is not long since the human genome was finally mapped in its entirety. Gene sequencing is now the new science that gives the key to unlock many doors and eventually give answers to so many questions about how we, as individuals, respond differently to attacks on our immune systems and respond differently to various treatments. It’s a very exciting time ahead, and is just at the beginning. As the cost comes down, many research studies will become feasible.
The GENVAS project is about collecting blood samples from vasculitis patients now, to be stored at low temperature, so that as the practice of gene sequencing develops and the cost comes down, and researchers get grants for this important area of research, there will be a ready-made bank of samples for analysis.
Both of these important projects have one thing in common; there is no funding from the usual sources of research grants, which demand clear identifiable goals and outcomes. So Vasculitis UK is funding future vasculitis research where there is no other funding available; an investment today for tomorrow’s research.
- Takayasu Arteritis - In the Spring of 2013 Vasculitis UK funded a student elective bursary at the Hammersmith Hospital in London. The project is to update the current Takayasu patient database to provide better and more accurate records on the Takayasu patients who attend the Hammersmith.
The information will be for the benefit of Takayasu patients attending the Hammersmith. In addition the data will be used for publication of a paper in a medical journal on the experiences at the Hammersmith and the benefit of early diagnosis in Takayasu Arteritis and the use of new imaging techniques to demonstrate the reversibility of early arterial lesions in those patients.
- Cytomegalovirus - In 2012 the Trust funded research at Birmingham University Hospital into Cytomegalovirus (CMV) and vasculitis, CMV update can be found in the VUK Spring 2016 Newsletter
- Alemtuzumab - In 2011 the Trust part-funded research into the drug Alemtuzumab at Addenbrooke's Hospital, Cambridge.
Previously funded research
The Trust awarded a postdoctoral fellowship to Dr Neil Holden, Birmingham University Hospital - 2008-2010. This resulted in the publication of the following papers:
- ANCA-stimulated neutrophils release BLyS and promote B cell survival: a clinically relevant cellular process - N J Holden, J M Williams, M D Morgan, et al - Ann Rheum Dis 2011;70:2229-2233. doi:10.1136/ard.2011.153890
- A Dual Role for Diacylglycerol Kinase Generated Phosphatidic Acid in Autoantibody-Induced Neutrophil Exocytosis - Neil J Holden, Caroline O.S Savage, Stephen P Young et al - M O L Med 17 (11-12) 1242 - 1252 , November - December 2011