Annual BSSA Meeting 2012

Newcastle is fortunate to welcome the Annual General Meeting of the British Sjögren’s Syndrome Association (BSSA) to the world renowned International Centre for Life on 15^th September, where many eminent members of the medical profession will give their time to address those attending the conference.  The conference is aimed at both patients, their supporters and allied health care professionals.

Sjögren’s Syndrome is the second most common autoimmune rheumatic disease where the body’s immune system attacks parts of the body instead of fighting infection.  In Sjögren’s Syndrome the glands that produce saliva, tears and other secretions become inflamed and as a result can stop working with key symptoms including dry eye and dry mouth.  Chronic fatigue can also be a major factor.  Sjögren’s Syndrome can strike at any age, but most commonly affects women between the ages of 40 and 60 and 90% of cases are female. Despite being discovered in the early 20^th century by the ophthalmologist Henrik Sjogren, the causes remain unknown with limited treatments available.

The BSSA is a charity dedicated to providing support and information to individuals affected by this disease, as well playing a key role in raising awareness.  Support groups operate throughout the UK helping sufferers to cope with the day-to-day challenges of this distressing condition. In addition, Dr Wan-Fai Ng, Newcastle University is the leading researcher for a national registry the ‘United Kingdom Primary Sjögren’s Syndrome Registry’ which is designed to investigate the causes of Sjögren’s syndrome as well as facilitate new clinical trials.

Our local support group the ‘North East Sjögren Support Association’ (NESSA), has over 40 members, and regularly meet at the Freeman Hospital to learn more about this condition as well as to socialise and to support each other. If you wish to know more about NESSA please contact Madge at madge_stokes@hotmail.co.uk .

If you would like further information about the BSSA conference you can email office@bssa.uk.net  or telephone Isabel on 0121 4780222. 

British Sjogrens Syndrome Awareness - Stephen McPhail

World Sjögren's Day

The Guardian recently published an interesting piece on Sjögren's Syndrome in preparation for its first World Day on the 23^rd July.

The article contains a lot of useful information and website links looking to raise awareness of the rheumatoid disease.

To read the article in full, click here.

PUBMED Clinical Trials and Sjogren's Syndrome

Useful PUBMED listing of clinical trials reported in the last three years.

UKPSSR Sjogren's Syndrome International Research Projects

The UKPSSR supports international research in the US and Europe - see this link for the current list of  International Collaborative Work

Venus Williams Explains Impact Of Sjogren's Syndrome

As you know Venus Williams has been diagnosed with Sjogren's Syndrome.  Venus gives a very watchable explanation of her condition on Youtube.

Venus Williams' Sjogren's Syndrome Diagnosis

No doubt, many have you have heard that Venus Williams was forced to withdraw from the US Open Tennis championship.   Here are some useful links on her diagnosis and its impact upon her from Time Magazine and The Guardian.

Sjogren's Syndrome Research 2011 The Last Six Months

• Check this link out to get the latest research into Primary Sjogren's Syndrome on PubMed.  
• The new Limits option allows you to restrict searches to the last month, three months, six months etc.  
• And you can save your search and request monthly updates by registering with the NCBI.

Follow News on the Primary Sjogren's Syndrome Registry

Would you prefer to follow the latest developments by email subscription?  Go to Follow by email, enter your email address and Submit.

Sjögren's Syndrome 2011 Medical Meeting BSSA

Following the huge success of the 2010 meeting, What You Want To Know About Sjögren's Syndrome, the next meeting Sjögren's Today is being held in Birmingham, England on 5th November 2011. Tickets are not yet available but members will be contacted as soon as they are available please remember that last year the meeting sold out.  This year priority will go to BSSA members. There will also be a social evening on Friday 4th November, more information check out the BSSA website.

International Sjogren's Research Symposium, Athens, Sep 28-Oct 1, 2011

The scientific research programme for the meeting in Athens, Greece is available for viewing!

Here are just some of the workshops and topics:


Workshop 1: Diagnostic Criteria of Sjögren's Syndrome
Workshop 2: Evaluation of Salivary Glands in Sjögren's Syndrome
Session: Basic Aspects of Immunopathology of Sjögren's Syndrome
Session: The Role of Sex Hormones in Sjögren's Syndrome
Session: Immunopathology
Session: The Role of B-Cells in Sjögren's Syndrome
Session: Basic and Clinical Aspects of Lymphoma Development in Sjögren's Syndrome
Session: Autoantibodies
Session: Sicca Manifestations in Other Autoimmune Rheumatic Diseases
Session: Animal Models in Sjögren's Syndrome
Session: Update on Genetic Analyses in Sjögren’s Syndrome
Session: Basic and Physiologic Aspects of Salivary Glands Function
Session: Treatment of Sicca Manifestations
Session: Conventional and New Treatment for Systemic Disease

Sjogrens Syndrome Books

More Sjogrens Syndrome Books

Sjogrens Research

Latest on Sjogren's Registry Research Ethics and the National Patient Safety Agency.

More Sjogren's Syndrome Research at EULAR, London, 2011.

This year we have another three papers for EULAR (European League Against Rheumatism) coming out of the UKPSSR.  The EULAR annual meeting is now the largest international congress in rheumatology attracting around 18,000 delegates (both basic scientists and rheumatology specialists and allied health professionals) from all over the world. 

1. INCREASED HYPERTENSION RISK in Patients with Primary Sjogren's Syndrome: Results from the UKPSS REGISTRY
2. AUTONOMIC DYSFUNCTION and SLEEP Disturbance Correlate with Symptoms of FATIGUE in Patients with Primary Sjogren's Syndrome
3. Relationship between Disease Activity of Primary Sjogren's Syndrome and Patient Reported Outcome - Data from an Interim Analysis of the UK PRIMARY SJÖGREN'S SYNDROME REGISTRY.

EULAR Award for Cardiovascular Risk Research in Sjogrens Syndrome

Dr. Maria Juarez, a rheumatology specialist trainee in Birmingham, has been awarded a prestigious European League Against Rheumatism (EULAR) bursary for her work on the study of the prevalence of traditional cardiovascular risk in patients with primary Sjogren's syndrome, a sub-study of the UKPSSR. She will be presenting her work on behalf of the UKPSSR on 27 May, 2011 at the EULAR annual conference in  London. 

This year three studies from the UKPSSR cohort will be presented. The EULAR annual congress is now the largest international congress in rheumatology expecting to attract 18,000 delegates (both basic scientists and rheumatology specialists and allied health professionals) from all over the world.

Clinical Trials and Sjogren's Syndrome

One of the primary objectives of the Sjogren's Syndrome Registry is to promote further research and clinical trials.  We noticed that not all of the UKPSSR trials appear on the current list but the NHS Choices site has a somewhat incomplete list of current trials worldwide.  Check out their Sjogren's Syndrome Clinical Trials page.

500th Patient - Sjogren's Syndrome Research Registry

The 500th patient has now been recruited to the Primary Sjogren's Syndrome Registry.

A big thank you to everyone involved!

Meanwhile the project has been extended to a revised target of 650 patients and the recruitment of healthy controls continues.

Sjogren's Syndrome Research into Biological Therapies

Recent paper on biological therapies in primary Sjogren's Syndrome by our very own Wan-Fai Ng and Simon Bowman.

Sjogren's Syndrome Health Explorer

Another useful link to the NHS Sjogren's Syndrome Health Explorer with lots more information.

Sjogren's Syndrome Patient Information Link

Another useful link http://www.patient.co.uk/health/Sjogren's-Syndrome.htm.