BUS is delighted to distribute the first Birdshot Research network newsletter which brings up-to-date news of where we have got with our exciting UK Birdshot database and biobank projects.

To find out more about the timescale please find your copy of Birdshot Research News 1 here.

Sue Southworth, our Birdshot research Nurse who is based at Birmingham was appointed in July.  She has been extremely busy working on the ethics for this complex undertaking,  and is working hard towards a timetable of launching the Birdshot database and biobank in April 2016.

Any patient who wants their eye clinic to be involved in this should feel free to tell their consultant of their wishes, and their consultant should in turn be in touch with Sue Southworth to tell her of their interest.     Alternatively you can tell BUS of your interest by filling in the attached expression of interest form and sending it to BUS.

You will  find Sue’s contact details are on the newsletter so print off a copy and take it to your next clinic appointment and give it to your consultant so that you can also be involved.

Currently we have 5 centres who have said they would like to be involved and unfortunately for the time being, because of logistics and ethics,  this project only applies to people with Birdshot Uveitis in England and Wales.

We look forward to hearing from you!

Annie

for team Birdshot

Recently we heard from Gill who is a Birdshotter based in South Eastern Australia.   She told us about some research that is taking place at Royal Victorian Eye and Ear Hospital in Melborne who have started a combined study in Birdshot with Melbourne University.

Gill said: “They were very interested when I said that there may be other birdshot patients here in Victoria and beyond. If you are in Australia and  interested in taking part (a simple blood test so far) could you let me know via Annie at Birdshot Uveitis Society info@birdshot.org.uk.”

BUS has subsequently been in touch with the researchers involved in the study and heard back from Alex Hewitt who said:-

We are delighted to announce that we have just heard from Fight for Sight that the call for the Joint Small Grant Awards Scheme is now open.

The link to the Small Grant Awards Schemes webpage is http://fightforsight.org.uk/funding-types/articles/small-grant-awards-schemes

This year we have  three small grants of £15,000 available for Birdshot Research.  The closing date for applications is 5pm on Wednesday 27 August 2014.

Birdshot uveitis: current and emerging  treatment options is the title of a recently published paper by Victor Menezo from Institut Catala de Retina, Barcelona, Spain; Department of Ophthalmology, Provincial Hospital Consortium Castellon, Castello, Spain and Simon R J Taylor  Faculty of Medicine, Imperial College London, Hammersmith Hospital, London, UK; Royal Surrey County Hospital NHS Foundation Trust, Guildford

(Note: the whole paper can be downloaded as a pdf by following the link above and scrolling to the bottom of the abstract.)

This paper provides a comprehensive summary of current  tests and treatments available for Birdshot Uveitis.  It clearly makes the important point that, although central visual acuity can be preserved until late in the disease, it is not uncommon for patients to receive inadequate immunosuppressive treatment, leading to a poor long-term outcome in which peripheral retinal damage eventually leads to visual deterioration.

It also states that  although “laboratory research continues to investigate the underlying mechanisms of disease, and clinical research is now being driven to improve the phenotyping and monitoring of this condition, it is becoming increasingly important to identify patients at risk of visual loss early so that they can be treated more aggressively with targeted therapies such as the newer biological agents.”

It states that “this approach requires the formation of collaborative groups, as the relative rarity of the condition makes it difficult for one center to accumulate enough patients for worthwhile studies. Nevertheless, results obtained with newer therapies, such as biological agents directed against particular cytokines or cell-surface receptors, demonstrate ever improving control of the inflammation in refractory cases, providing hope that the outlook for visual function in this condition can only improve.”

This paper certainly gives BUS hope.  It is gratifying that it clearly endorses our belief about the best way forward, just at the point when we are getting collaborative work off the ground with the National Birdshot Research Network; and the development of the Birdshot bio-resource centre and Birdshot database.

BUS is delighted to announce that two exciting research projects are about to commence.

 1)    the development of a National Birdshot Bio-Resource Centre and;

 2)    the development of a National Birdshot Uveitis Registry.

These two projects are coming to fruition thanks to the hard work of Birdshot Uveitis Society supporters who have helped raise the money and also thanks to the imagination, ingenuity and resourcefulness of clinicians and research scientists who are involved in the National Birdshot Research Network.

The Bio-resource Centre project is being jointly funded by BUS and Fight for Sight, the main UK charity dedicated to funding eye research to prevent sight loss and treat eye disease, via a jointly funded Small Grant Award of £15,000.  50% of the costs has been raised by Birdshotters who took part in the 2012 Carrots Nightwalk, a six and 15 mile charity walk, with matched funding from Fight for Sight.

 The development costs of the National Birdshot Uveitis registry is being funded by BUS with money our supporters have donated over the last year and donations from the BUS 2013 Shoot which is our major fundraiser.  This award will be administered by Fight for Sight.

Thank you so much to everyone for your time and generous support. We wouldn’t have got this far without it!

World’s first birdshot uveitis biobank project

This research proposal is one you may have previously seen mentioned here: establishing in the UK the world’s first birdshot uveitis biobank. Biobanks collect and store donations of anonymised patient samples of blood, urine and other tissues. Approved researchers can then use these materials, feeding back their research data to the biobank. This adds to the original information held about the samples, which increases their usefulness to future researchers.

Rather than set up an independent birdshot biobank, it makes economic sense to use an existing biobank. The established Infectious Diseases Biobank at King’s College Hospital, London, has expanded to include collections of samples from patients with inflammatory conditions. This means that the Birmingham-based researchers’ proposal to set up the birdshot biobank within the biobank at King’s College Hospital fits in well with King’s existing work.

The project will start by recruiting a small number of birdshot patients from St Thomas’ Hospital, London, Moorfields Eye Hospital, London, and the Birmingham and Midlands Eye Centre, to donate samples to the biobank.

Clinical data from the National Birdshot Uveitis Registry (see below) would accompany the biobank samples. The combined resources of the National Birdshot Uveitis Registry and the National Birdshot Biobank would enable a great variety of statistically-valid and useful studies to be performed on large numbers of birdshot patient samples.

It is hoped that the birdshot biobank will eventually provide the opportunity for all UK birdshotters to contribute to research by donating their samples. Our involvement will provide the keys to help researchers start to unlock some of the mysteries of birdshot and to improve its treatment.

Developing a UK-wide National Birdshot Uveitis Registry

To be statistically significant, medical studies need to be done on large numbers of patients. Because birdshot is a rare disease, it has been difficult up to now to recruit enough patients to do useful research. Although large studies of up to 80 birdshot patients have been carried out in several European centres, similar scale studies have not been conducted in the UK, principally because birdshot patient information is not held in one place. Creating a national registry database of UK birdshot patients would provide a resource of information on birdshot which would have many potential uses.  

The proposed National Birdshot Uveitis Registry (NBUR) will collect and hold clinical data on birdshot patients centrally, including test results such as angiograms and OCT scan images. From the initial pilot study involving data from a few patients at University Hospitals Birmingham and the Birmingham and Midland Eye Centre, the eventual aim is for all UK birdshot patients to be invited to register with the NBUR.

The first step in the proposed study will be to develop a patient details database at University Hospitals Birmingham, test it and perform some data analysis. The database will then be tried out with data from a small number of Birmingham birdshot patients, then modified as necessary, and then piloted at National Birdshot Research Network partner sites in the UK.

One use of the registry data will be to accompany the samples sent to the UK birdshot research biobank (see above). Other proposed uses for the data include identifying patients suitable for clinical trials, collecting drug safety data, especially for newer treatments, and eventually being able to identify ‘best practice’ and promote better care by enabling treatment centres to compare the progress of their patients within the context of a national picture.

University Hospitals Birmingham already develops and operates national databases through their established Rare Disease Service, so this experience will be invaluable in setting up the National Birdshot Uveitis Registry.

Earlier this year, Birdshot Uveitis Society took part in the  Sight Loss and Vision Priority Setting Partnership which uniquely captured the views of patients, relatives, carers and eye health professionals to identify what research into sight loss and eye conditions should be addressing. It is rare that those with direct experience of conditions are able to influence the research agenda and we at BUS were delighted to participate.

Taking part in something like this is so important in helping to get a rare condition like Birdshot Uveitis better recognised.  It has really helped to get us on the map in terms of getting research done.   It is easy to forget that until very recently Birdshot Uveitis was considered incredibly rare affecting very few people.  By raising the profile and forming a network we are getting a better idea of the true picture.

If anyone wants a hard copy of the report sent to them they can get in touch with us or Fight for Sight to get their own copy.

The section you will probably want to look at is the ocular Inflammatory eye disease section( Page 31).  Many Thanks to our members who helped participate in this process.

A PDF of the report is attached here.

BUS received the following request (see extract below)  and spoke to Persephone Newsholme to find out a little more about this Market Research which is  for a pharmaceutical company. Continue reading →