More Market research help required

We received the following in an email from  Hayley from Gillian Kenny Associates (GKA) who are a research company.

“GKA are running some research for people who have been diagnosed as having a severe visual impairment who currently receive injectable therapy / a combination of oral and injectable therapy. They will be evaluating auto injector devices and offering feedback on them with the aim to improve devices for future patients with a similar condition. They will not be self injecting, they will be injecting into a cushion and offering feedback.”

In a follow-up email  Hayley clarified that:-

“We are looking for people who receive injection therapy specifically for their visual impairment. Some of the conditions the client have specified include Uveitis, Glaucoma, Cataracts, Retinopathy and  macular degeneration. They will be evaluating and offering feedback on the auto injector devices in the research.

If you are interested in helping with this research which is taking place in London between 3rd November and 5th November, please see attachment here.  The Marketing company will pay BUS £20 for each person we introduce and you will also earn £60.  In addition they are prepared to discuss travel expenses.

Please note  I have checked and if you have Ozurdex implants we are told that this counts as an injectable therapy.

 

Sight Village London 4th November

This is an unmissable event for people who are blind or partially-sighted, for professionals supporting and advising VIPs and for all businesses and other organisations wishing better to meet the needs of their vision impaired customers.

QAC Sight Village has been described as “the premier exhibition for blind and partially-sighted people in the UK” and as ”the country’s leading expo of access tech solutions”. Each July thousands of visitors travel to Birmingham to find out at first hand the latest technology, products and support services available to people who are blind or partially-sighted.  Admission is FREE

Sight Village will again be visiting London as a part of our Sight Village Roadshows. These Roadshows allow us to bring our exhibition around the UK, making it easier for people to experience a Sight Village Event.  Exhibitors from throughout the world take part and we welcome hundreds of visitors, including people who are blind or partially sighted, professionals, business people and family members.  Please see attached flyer for details.

Sight Village London 2014 will take place on the 4th November at the Kensington Town Hall

 

3 birdshot research projects approved!

Eye new 8 BUSfight-for-sight-logoBUS, through the joint Fight for Sight/BUS Small Grant Awards 2014, is about to support three interesting pieces of research which have just undergone the grant approval process.  As you read on, you will see how some of the proposed research builds on earlier research started through the same grants scheme.

THE STUDIES

  1. Researchers at St Thomas’ Hospital, London, propose to develop and refine the use of the RETeval hand-held electroretinogram (ERG) device.
  2. Close analysis of patient data is at the heart of the study planned by researchers at Moorfields Eye Hospital, London. They hope to identify factors which could predict good or poor outcomes from birdshot treatments.
  3. Birmingham-based researchers want to study a laboratory technique called supercell analysis. This type of analysis might be able to distinguish between birdshot and other inflammatory eye diseases, moving a step nearer to creating a diagnostic test for birdshot.

1. RETeval ERG research

Dr Omar Mahroo and Professor Miles Stanford of St Thomas’ Hospital, London, with colleagues at Moorfields Eye Hospital, London and Australian National University, Canberra, want to investigate the potential use of the RETeval device to predict the response to birdshot treatments. They also want to see how readings obtained from RETeval compare with conventional ERG testing.

What is this study about?

Conventional full field ERG testing is not available in all eye units. Testing takes up extra patient and clinic time, especially if it involves patients having to visit another hospital for an ERG. These problems can also mean that ERGs may not be done as frequently as other birdshot monitoring tests. Having a reliable and quick method of performing ERGs in more eye departments would be a useful addition to assessing birdshot. The study aims to see if ERGs recorded with RETeval could be useful in identifying early birdshot uveitis activity. The researchers also want to test the potential use of RETeval ERGs in monitoring or predicting responses to treatment. Additionally, the study will look at whether ERGs could reliably be done with RETeval without the need for dilating the eyes first.

How will the study be done?

The RETeval will be used to measure the photopic 30Hz flicker implicit time. This is altered in birdshot. Study subjects would have their ERGs recorded with RETeval at the start of their clinic visit, before dilating drops have been used, and then recorded again, with dilated eyes, at the end of the clinic visit. This is to see whether or not the ERG results from undilated eyes are as reliable as those obtained from dilated eyes.

A control group of patients from the long-term Twins UK study, based at St Thomas’ Hospital, will be used to provide conventional ERG recordings. Their results will be compared with the RETeval results to see if any correction factors need to be used when comparing results obtained from RETeval with those from conventional ERGs. The control group will also provide genetic information which may help understand the variation in ERG responses in people with and without birdshot.

Results from this research could potentially improve the care of birdshot patients in many eye departments. The study should also provide data to assist in the use of RETeval ERGs in monitoring of new treatments, like the trial of infra-red light in birdshot which is in progress at Moorfields Eye Hospital, and which was part funded by BUS.

2. Factors in birdshot which result in a good outcome

Mr Mark Westcott and colleagues at Moorfields Eye Hospital, London, plan to conduct an in-depth analysis of the records of their group of birdshot patients.

What is this study about?

From their analysis of their birdshot patient records, the researchers aim to get a better understanding of which early features of birdshot might predict a good or less good outcome from treatment. At present, patients diagnosed with birdshot cannot be told about the likely progression of their uveitis because it varies so much between individuals.

How will the study be done?

Using specialised statistical analysis of patient results and tests, the researchers hope to identify factors present at the diagnosis of birdshot which could predict poor or good outcomes at the end of at least five years of observations. The study’s chosen end-points of visual outcome will be those that mean most to patients in their daily lives, such as whether a person retains vision good enough to continue driving.

The researchers will also look for other factors which might influence the course of an individual’s birdshot, eg, genetic markers. This part of the study links with recent findings that at least one other non-HLA-A29 genetic marker is present in some, but not all, birdshot patients.

As well as hoping in the future to be able to provide accurate and useful information at the time of diagnosis and during the management of birdshot, the researchers believe that the findings of their study will enable future randomised controlled trials of birdshot treatments to be better tailored to the patient’s birdshot.

3. Can supercell analysis diagnose birdshot uveitis?

Dr Graham Wallace and colleagues at the University of Birmingham want to answer this intriguing question.

What is this study about?

Currently, there is no diagnostic test for birdshot. This proposed laboratory research study may lead to the development of a diagnostic test. The study’s technique of flow cytometry analysis is based on the concept of blood samples being assessed as ‘supercells’, where each supercell is obtained from 500 randomly-chosen cells. A machine-learning technique can determine the combination of factors that can indicate a disease, and it can then work out how many of these factors are needed to diagnose a disease.

How will the study be done?

The study will make use of 30 of the blood samples donated to the birdshot biobank which BUS helped to fund.

Supercell analysis has already been shown to be capable of distinguishing between patients with eye disease and healthy controls, and also between patients with uveitis caused by Behçet’s disease and uveitis caused by sarcoidosis.

The study will also seek to link the levels of supercells to birdshot disease activity. In addition, the Birmingham researchers, like those involved in the proposed Moorfields study, want to look more closely at the genetic make-up of the birdshot patient samples, following the finding of other non-HLA-A29 genetic markers in some birdshot patients.

Finally…

It is encouraging to see another three lines of birdshot research going forward.   Our fundraising for birdshot research really is beginning to make a difference. Results from these types of investigations will slowly but surely improve birdshot diagnosis, its treatments and its outcomes.  We would like to thank everyone who has helped raise the funds to help make this birdshot research a reality.

Next PINGU meeting in Birmingham

The next meeting of the PINGU (Patient involvement group for uveitis) is planned for 30th September 2014 at 6:30 pm in the CRF on ward D46.

This is a local support group for people with all types of uveitis that the Birmingham and Midland Eye Centre run.  If you want to obtain more information about uveitis and its treatment, come along and meet others with this type of eye problem as well as some of the eye clinic staff.

Please do let Sue Southworth know if you are planning to attend.

 

Sue Southworth, Research Nurse/ Co-ordinator

Birmingham and Midland Eye Centre

Tel +44(0)121 507 6844

 

3 small grant awards for research into Birdshot

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.

 

 

Help Chris raise money for Moorfields Eye charity

We’ve just received the following from Chris Hames, one of our members which we would like to promote.  He’d really appreciate your support!

Like a fool & something to do on a Sunday I have elected to cycle the London Surrey 100 cycle ride on the 10th August 2014. I thought for my effort it would be a good idea to raise some money for Moorfields Eye Charity & aim to raise at least £550. I do do some cycling when it is not windy & the sun is shining, but to date (two weeks ago) my maximum has been 51 miles & I did spectate on the Tour De France at the weekend just to see “how easy” it is (still not convinced). Any way, if you can post my link on the website https://www.justgiving.com/chris-Hames1/, I would appreciate as much support as I can to gee me up Box Hill & Leith Hill, finishing on the Mall hopefully will be the easy bit.

Many thanks,

Chris Hames.

Getting the word out to opticians and optometrists

FD584 Logo Final copy image001Opticians and optometrists are a group of people BUS really want to reach as they are the normal port of call when something goes wrong with your sight.   In my own case I must have gone to different opticians complaining about various symptoms four or five times before one of them realised that there was  something wrong with my eyes and asked if I would like to be referred!

It was with great pleasure that we came across 2 websites for opticians and the public where there was a charity section and where our details could be added:

The “Local Optician” public site is reached by over a 1000 people each day and the “Primary Health Net” for professionals is read by over 7500 professionals, 4 x a month.  They are also going to announce our presence in their regular fortnightly newsletter to their professional members.

We also notice that a link to our website also appears in The Ask the Optician section on the Specsavers website.  specsavers-logo-gbenIt comes under the Eye Health section.   If you type Birdshot into the box it takes you to this link, which in turn provides our website address and the comment: 

“There is a web site devoted to this disease that has all the information you my need”

http://www.specsavers.co.uk/ask-the-optician/what-is-birdshot-chorioretinopathy/

It’s good to see that more and more opticians have now actually heard of Birdshot Uveitis and are taking an interest in it.  Reassuringly,  a growing number of BUS’s UK members have been referred straight to a uveitis specialist after their opticians examination revealed a problem.