News from BUSNA

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

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

 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.

Patient experience survey for Moorfield Patients

Calling any Moorfields patients! They are refreshing their strategy and they are inviting patients to be part of the process by sharing stories of their experiences of care at Moorfields over the past few years. They want stories of when the relationship between patients (or friends/family/carers) and the Moorfields team have been working really well. More details below- so if anyone’s got a few minutes to contribute to this important project, you’ll be helping ensure that the voices of Bidshot Uveitis patients are included in this process and helping shape Moorfields’ future! Thanks in advance to anyone who has a few mins to contribute. Link below.


People can share their story through via this web link Moorfields Patient experience survey which also explains a bit about the project.

Measuring the birdshot experience

Receiving a birdshot uveitis diagnosis, then coping with its effects on vision, plus all the clinic visits, tests and the effects of treatments, have profound effects on many areas of a person’s life. Identifying, measuring and raising awareness of the wider effects of a rare condition like birdshot requires research. Recently published work carried out in Birmingham, UK, has moved this topic forward.

The researchers directly measured several aspects of the quality of life experienced by a group of people with birdshot uveitis. This was done by using a series of questionnaires to create a ‘health utility value’ for birdshot.

The researchers hope that their work ‘could lead to a change in the way [birdshot] patients are assessed and the care they receive.’

Their research was supported by a grant from Fight for Sight/Birdshot Uveitis Society.

You can read about the research here: Creating a Health Utility Value for Birdshot Chorioretinopathy.

ZOE COVID-19 webinar on vaccines and a reduced immune system

The latest COVID-19 webinar (3rd March 2021) from ZOE, also available on YouTube, is about the COVID19 vaccines and specifically how well it works on those who have a suppressed immune system.   There is also an interesting blog for you to read if you don’t have the time to watch the ZOE webinar  but want to find out more about this which is linked to here.

The  British Society of Immunology have also produced a handy guide to the vaccines for covid-19  which may answer some of your questions that you may be anxious about.

We are also reposting the link to the UK’s Uveitis National Clinical Study Group Q&As current
advice (updated on January 8th 2021) which should answer many of your questions:
https://www.uveitisstudygroup.org/?id=33

As always, contact your eye doctor and follow their instructions if you have any unanswered
questions about the COVID-19 vaccines and your personal immunosuppressant treatment
regime.

Q & A on the COVID-19 vaccines

Following on from the ZOOM webinar which was held in December about COVID 19 vaccines here are some of the questions and answers from it plus other useful information that you might want to read about the COVID19 vaccines including information on when you might expect to get it.

Thanks to everyone who asked useful questions and thanks to Sri Sharma from Oxford and Maheshi Ramaswamy who is a trialist on the Oxford Vaccine who has put this together for all Uveitis patients.

The Uveitis Study Group has developed information about vaccination against COVID 19. This can be found here along with a link to join the patients group of the USG and receive further information directly to your email.https://www.uveitisstudygroup.org/?id=33

Webinar about COVID19 Vaccines

This email came from Charlotte. It’s an invitation to a Zoom meeting on Thursday 10th December 2020 18.30 – 19.30 (UK time) which is extended to our Birdshot members. Please do get in touch if you would like to have the Zoom link sent to you!

“Hope you are all keeping well – especially during lockdown 2.0!

We are having another PInGU meeting in a few weeks’ time and we have managed to get Dr Christopher Green https://www.birmingham.ac.uk/staff/profiles/microbiology-infection/Dr-Christopher-Green.aspx to speak about vaccines.

Please do feel free to forward the invite to anyone you feel may be interested as I think with all of the talk around vaccines at the moment this might be particularly beneficial to patients.

It’s on zoom again just like we did during the summer.

Best wishes,

Charlotte”

US edition of the Birdshot Survival Guide

The US edition of the Birdshot Survival Guide, edited by Patricia Clarke and Leanne Oswald

BUS is delighted to publish online, a revised edition of the Birdshot Survival Guide, especially for Birdshotters who live in the US. BUS members Patricia Clarke and Leanne Oswald collaborated on this and provide us with the revised edition.

At the moment there are not plans to print physical copies but we suggest that you may like to print off copies of the last few pages of the guide (page 34 – 39), to keep with your notes about your eye clinic appointments so that you can note down useful number that you can have readily to hand.

COVID19 and Birdshot Uveitis

The aim of this video is to give a list and a very brief rundown of resources for patients with Uveitis/Ocular Inflammation, not just in the United Kingdom but worldwide. These cover practical advice, where to go for support and wellbeing, and sources for self-monitoring. *Disclaimer: Have only just recovered from four weeks illness myself so voice is sounding really low energy. Sorry!* LINKS to resources mentioned in the video: UK Uveitis Resources: Uveitis National Clinical Study Group. Many of the resources highlighted in this video are to be found on our website here: https://www.uveitisstudygroup.org/ Twitter @UveitisCSG UNCSG COVID-19 portal: https://www.uveitisstudygroup.org/cov… UNCSG Patient FAQ: https://www.uveitisstudygroup.org/cov… Patient risk self-score grid: https://www.uveitisstudygroup.org/use… PinGU (Patient involvement group in Uveitis): https://www.uhb.nhs.uk/patient-involv… Olivia’s Vision UK (support for anyone affected by Uveitis): http://www.oliviasvision.org/ Twitter @OliviasVision British Society of Rheumatology https://www.rheumatology.org.uk/covid… Twitter @RheumatologyUK (Webinars advertised here) Versus Arthritis (Practical Information): https://www.versusarthritis.org/news/… Behçet’s Disease: https://behcets.org.uk/coronavirus-co… Twitter @BehcetsUK ——————- UK General Resources: NHS Hub: https://www.nhs.uk/conditions/coronav… Hand Hygiene: https://www.nhs.uk/live-well/healthy-… UK Government: https://www.gov.uk/coronavirus UK Govt: Guidance on social distancing and self isolation: https://www.gov.uk/government/publica… ——————- North America: American Uveitis Society Resources: https://uveitissociety.org/ Letter for patients on immunosuppression from MERSI: https://uveitis.org/coronavirus-disea… USA Government guidelines: https://www.cdc.gov/coronavirus/2019-… Canada Government guidelines: https://www.canada.ca/en/public-healt… France: https://www.gouvernement.fr/info-coro… IUSG in French: https://www.iusg.net/uploads/images/I… ——————- Australia and NZ: https://www.health.gov.au/news/health… https://arthritisaustralia.com.au/wor… https://www.health.govt.nz/our-work/d… WHO: https://www.who.int/emergencies/disea… ————————————————————————————- Self-Monitoring College of Optometrists A4 sheet for home vision checking: https://www.college-optometrists.org/… Amsler grid for macular problems: https://www.macular.org/wp-content/up… Home vision checking apps: Peek Acuity: https://www.peekvision.org/en_GB/peek… Kay iSight Test Professional app (useful for children above 18 months): https://kaypictures.co.uk/product/kay… ——————- Mental Health Mind.org.uk general advice: https://www.mind.org.uk/information-s… NHS Every Mind Matters tips and ideas: https://www.nhs.uk/oneyou/every-mind-… NHS One You apps to help reduce stress, anxiety and to improve mood: https://www.nhs.uk/oneyou/apps/ Online communities: Healthunlocked.com CRIS helpline for 24/7 counselling: https://www.crisistextline.org/topics… Twitter: @crisistextline ——————- For Parents and Children PRES video: https://wordday.org/wp-content/upload… This is a new and useful resource for families of children with inflammatory eye disease and especially those on immunosuppressive meds. https://www.uveitisstudygroup.org/use… The CCAA site: https://www.ccaa.org.uk/ CCAA info on shielding for children and teenagers: https://www.ccaa.org.uk/wp-content/up…