Birdshot research news – July 2024

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We recently received details of some new research on birdshot from Jonas Kuiper and colleagues. Jonas says: ‘We’ve identified a new immune cell involved in birdshot which helps us better understand how the immune system’s communication gets mixed up in this condition. It also connects with the HLA-A29 and ERAP1/2 genes.’ This paper is not an easy read, but it shows how research is gradually uncovering what is going on in the many processes involved in birdshot. 

Single-cell profiling identifies a CD8bright CD244bright Natural Killer cell subset that reflects disease activity in HLA-A29-positive birdshot chorioretinopathy

Pulak R. Nath, Mary Maclean, Vijay Nagarajan, Jung Wha Lee, Mehmet Yakin, Aman Kumar, Hadi Nadali, Brian Schmidt, Koray D. Kaya, Shilpa Kodati, Alice Young, Rachel R. Caspi, Jonas J. W. Kuiper and H. Nida Sen 

 https://shorturl.at/gqc0l

Research news from July 2021

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Although this paper was published three years ago, we have now included it in our Birdshot research papers section of the website, under Birdshot overviews. The paper provides a useful and interesting ‘where we are now’ review of the history of diagnosis, testing and treating birdshot uveitis. The authors emphasise the importance of, among other things: early diagnosis; imaging, especially the use of indocyanine green angiography; and the need for early and prolonged intensive treatment.

HLA-A29 Birdshot Retinochoroiditis in Its 5th Decade: Selected Glimpses into the Intellectual Meanderings and Progresses in the Knowledge of a Long-Time Misunderstood Disease

July 2021

Papadia M, Pavésio C, Fardeau C, Neri P, Kestelyn PG, Papasavvas I, Herbort CP

HLA-A29 Birdshot Retinochoroiditis in Its 5th Decade: Selected Glimpses into the Intellectual Meanderings and Progresses in the Knowledge of a Long-Time Misunderstood Disease (abstract)

Respiratory syncytial virus (RSV) vaccine to be offered in UK from September 2024

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Immunisation against respiratory syncytial virus (RSV) will be offered by the NHS in UK for the first time from September 1st 2024 to those turning 75 years of age. 

It will be a year-round offer for those aged 75, alongside a catchup programme for those aged 75 – 79 years of age. The vaccines offered for these age groups are called Abrysvo and Arexvy. 

The Abrysvo vaccine will also be offered to pregnant women from the 28th week of pregnancy.

Abrysvo and Arexvy are not ‘live’ vaccines, so they can be given to people who are taking immunosuppressant treatment. Note that the response to any permitted vaccine is likely to be less than expected if a person is on immunosuppressant treatment.  More information: https://www.nhs.uk/conditions/respiratory-syncytial-virus-rsv/

Flu and COVID-19 booster UK NHS Autumn 2024 campaign

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The UK’s national booking service for the Autumn 2024 annual flu vaccine and COVID-19 Autumn booster vaccine opens to the public on Monday September 23rd. You may be contacted by your GP practice earlier than this to make a booking. 

You may not be automatically contacted by your GP practice to be offered these immunisations and you may have to ask about receiving them, particularly if you have started immunosuppressant treatment in the last 12 months. 

The main UK flu and COVID-19 vaccination campaign starts on Thursday October 3rd. 

The last date for receiving both vaccines is Friday December 20th, but you may be able to get the flu vaccine until Monday March 31st 2025. 

Flu vaccine

As well as pregnant women and children being offered flu vaccine from September 1st, the following groups are being offered flu vaccine from October 3rd:

  • Age 65 and over (50 and over in Northern Ireland)
  • Age 18 to 65 in a ‘clinical risk group’ – this includes people on immunosuppressant treatment and/or on doses of 20mg/day or more of prednisolone for more than one month
  • Close contacts of immunocompromised people
  • Residents in long-stay care homes 
  • Carers who get Carer’s Allowance or who are the main carer of an elderly or disabled person
  • Frontline health and social care staff 

For more information, see: https://www.nhs.uk/vaccinations/flu-vaccine/ 

In Scotland, the eligible groups for flu vaccine are wider. See: https://www.nhsinform.scot/flu-vaccine 

In Northern Ireland, see: https://www.nidirect.gov.uk/articles/flu-vaccine

COVID-19 vaccine

An Autumn COVID-19 booster is being offered to the following groups:

  • Age 65 or over
  • Age 6 months to 64 years in a ‘clinical risk group’ – this includes people on immunosuppressant treatment and/or on doses of 20mg/day or more of prednisolone for more than one month
  • Residents in care homes for older adults
  • Frontline health and social care staff

Eligibility is the same across all countries of UK – England, Wales, Scotland, Northern Ireland.

Note that there appears to be no offer of COVID-19 vaccine this year to those aged 12 to 64 who are household contacts of people on immunosuppressant treatment. 

For more information on UK COVID-19 immunisation, see: https://ukhsa.blog.gov.uk/2024/08/02/whos-eligible-for-the-2024-covid-19-vaccine-or-autumn-booster/

BIRD-SET study

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Would you like to take part in research to improve birdshot treatment and tests? Do you attend either Moorfields Eye Hospital, London or University Hospitals Birmingham (Queen Elizabeth Hospital) for your eye care? If you answered ‘yes’ to both those questions, you will be interested to hear about the new BIRD-SET research study. BUS is delighted to support Dr Colin Chu, the BIRD-SET study leader.

About BIRD-SET

The Birdshot Dataset Study (BIRD-SET) has just opened. It will run until the end of 2024. 

All patients with a diagnosis of birdshot who attend either Moorfields Eye Hospital or University Hospitals Birmingham – Queen Elizabeth Hospital will be invited to join the study.

The aim is to generate one of the largest combined research datasets in birdshot. This will greatly advance understanding of the condition and how patients respond to treatment. 

How does it work?

There are three parts to the BIRD-SET study, but not everyone who is enrolled will do all three parts.

Part one of BIRD-SET is for all who are taking part. First, they will be invited to provide a saliva sample for genetic sequencing. Next, they will be asked for a blood sample to be donated to the biobank held by the NIHR BioResource Rare Disease Study. This will be used for future research. Finally, there is the opportunity to contribute their medical history and eye imaging data to the Birdshot-ABC Study. This existing study aims to share birdshot clinical data and eye images anonymously to generate quality standards and improve the care of birdshot in the UK.

BIRD-SET’s second part is for those who are starting new immunosuppressant treatments. They will be asked to provide an additional blood sample. This is to trial a new test that could allow doctors to predict whether individuals will respond to a medication before they start it.

The third part of BIRD-SET is to test a new non-invasive imaging technique that could identify how well the retina is functioning in birdshot. This new kind of imaging could supplement or replace current monitoring tests such as fluorescein angiography or electroretinography (ERG).

Funding

The BIRD-SET study is receiving support from Regeneron Genetics Centre LLC, USA, Moorfields Eye Charity and NIHR Moorfields Biomedical Research Centre for Ophthalmology. The chief investigator is Dr Colin Chu (Moorfields and UCL) and the principal investigator at Birmingham is Dr Balini Balasubramaniam (UHB). If you are a patient and would be interested in receiving more information to participate, please email alexis.wormall1@nhs.net.

What if I don’t go to Moorfields or Queen Elizabeth Hospital Birmingham?

Unfortunately BIRD-SET is only available for patients at Moorfields and UHB. However you may be able to take part in the NIHR BioResource study at one of the other centres closer to you by asking if you can be recruited to the Rare Disease Birdshot study. Please see https://bioresource.nihr.ac.uk/centres-programmes/ and https://bioresource.nihr.ac.uk/centres-programmes/rare-diseases-bioresource/

Flu vaccine 2023-2024 season, UK NHS

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The UK’s NHS flu immunisation programme for adults and eligible children started on September 11th 2023. 

Flu immunisation is being offered to the following groups of people:

  • Age 65 and over (England and Wales); age 50 and over (Scotland and Northern Ireland)
  • Age 6 months to under 65 years in ‘clinical risk groups’ – this includes people on immunosuppressive treatment
  • Close contacts of immunocompromised individuals – this includes close contacts of people on immunosuppressive treatment
  • Workers in residential care homes, domiciliary care, hospices
  • Healthcare workers
  • Carers for elderly or disabled people
  • People in long-stay residential care
  • Pregnant women
  • Children aged 2 – 3 years on August 31st 2023
  • School-aged children (Reception to Year 11)

You may be offered the flu vaccine and the COVID-19 booster at the same appointment. 

For more information, go to https://www.nhs.uk/conditions/vaccinations/flu-influenza-vaccine/

Covid-19 Autumn 2023 booster vaccine, UK NHS

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A COVID-19 booster dose immunisation programme will be available in UK from September 11th 2023. 

The COVID-19 booster dose is being offered to the following groups of people:

  • Age 65 and over
  • ‘Clinically vulnerable’ people aged 6 months – 64 years – this includes people on immunosuppressive treatment
  • People aged 12 – 64 who are household contacts of people with immunosuppression
  • Care home residents and staff
  • Frontline health and social care workers 
  • People aged 16 – 64 who care for elderly adults

You may be offered the COVID-19 booster and the flu vaccine at the same appointment. For more information, go to https://healthmedia.blog.gov.uk/2023/08/08/covid-autumn-booster-vaccine-2023-everything-you-need-to-know/

https://healthmedia.blog.gov.uk/2023/08/08/covid-autumn-booster-vaccine-2023-everything-you-need-to-know/

News from BUSNA

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BUSNA = Birdshot Uveitis Society of North America

Birdshot Uveitis Society of North America (BUSNA) has had a busy first year. They celebrated their first birthday in June by releasing enhancements to their website (www.busna.org) designed to support fellow Birdshot patients. The enhancements include:

  • The Wellness Room a page dedicated to providing activities, sights and sounds that Birdies can use to relieve the stress the disease can cause. Readers can access links to you or ballet classes, museum tours, exercise and ;healthy diet tips and more.
  • The Canada page, where visitors can keep track of the exciting research and Birdie activity emerging there.
  • A Frequently Asked Question (FAQ) page where BUSNA offers a library of links to information where Birdies can find answers to some common questions
  • A research page which describes the two organizations whose Birdshot research BUSNA currently supports

In addition to website activity, BUSNA has hosted three regional online meetups to bring Birdshot patients together in a casual gathering to discuss the Birdshot journey. BUSNA plans to continue these meet ups in the Fall.

BUSNA invites all to visit www.busna.org and sign up for our mailing list to receive occasional email updates and notices about their accomplishments.

Christine Griffith – BUSNA July 2021

ASTUTE – a new clinical trial starting

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We are pleased to tell you about a new clinical trial called ASTUTE which is due to start in England in 2021. BUS has been involved in helping plan this trial.   

ASTUTE will use an adalimumab biosimilar as the study medication. This will be added on to existing standard treatments for non-infectious autoimmune uveitis. Adalimumab biosimilars are newer, highly similar versions of the original adalimumab, Humira. 

The ASTUTE trial will be looking at how effective the study medication is, how well it is tolerated and how cost-effective it is. 

ASTUTE is designed to help doctors find out how the use of an adalimumab biosimilar might improve the treatment of a broad group of non-infectious autoimmune uveitis patients. The trial should also show which patients would benefit the most from adalimumab treatment.

Birdshot patients who do not currently meet the NICE criteria in England for adalimumab treatment may be considered for enrolment in the ASTUTE trial, as well as those who do.

To find out more about ASTUTE and to read the patient information leaflet, go to https://bristoltrialscentre.blogs.bristol.ac.uk/details-of-studies/astute/

Future newsletters will include updates on how the ASTUTE trial is progressing, and we will also let you know which hospital sites have opened for recruitment to the trial. 

July 2021

Birdshot ABC project July 2021

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 The Birdshot ABC study is now re-opening at sites after temporarily pausing due to COVID-19. We are very excited to re-open the study and also to implement a brand-new database which has been specifically designed for the study. 

If you have alreadyconsented to the study, the research team that you see may be in touch to re-consent you to the new version of the study documents; this may be via post, telephone or at your next clinic visit. You will be asked to re-consent because there have been some minor changes to the study, and we need to make sure you are happy with the changes. Re-consenting involves reading the new Participant Information Sheet (PIS) and then signing a new updated consent form if you agree to the changes. 

The main changes are: 

Recruitment: Participants can now be sent information about the study in the post and can consent to the study on the telephone

Data collection: The study now collects anonymised eye images as well as data 

Data collection tool: The study now uses a new database provided by an external company called Big Picture Medical. Big Picture are experts in data collection for ophthalmic diseases, and University Hospitals Birmingham, as study sponsor, has a contract in place with them to make sure data is used only for the purposes of the research study. 

If you haven’t yet consented to the study and want to take part, the sites below are currently open for recruitment: 

  • Guy’s and St Thomas’ NHS Foundation Trust – Miles Stanford
  • Manchester University NHS Foundation Trust – Laura Steeples
  • University Hospitals Birmingham NHS foundation Trust – Alastair Denniston
  • Moorfields Eye Hospital NHS Foundation Trust – Narciss Okhravi

The sites below are taking park but are currently still paused to recruitment. However, they should be opening soon:

  • University Hospitals Bristol NHS Foundation Trust – Andrew Dick
  • Leeds Teaching Hospitals NHS Trust – Kanchan Bhan

If you want to take part in the study, please ask at your next hospital appointment or ask for your details to be passed on to the research team, who should then follow up with you.

If your hospital isn’t taking part yet, don’t worry. Our long term vision is to have all UK hospitals that care for birdshot patients signed up to the study. This does, however, take time, so we will keep you updated when new centres come on board.