Springnews2005.pub

Spring Newsletter
www.scleroderma-royalfree.org.uk
Scleroderma Family Day - 10th Anniversary - Saturday 21 May
Spring Update on Departmental Clinical News
Blood Flow Studies Lab Spring Update
The past few months have been busy for the clinical unit. We have Spring has started with European travel, and there is more in been working hard to juggle admissions. This has been a busy winter prospect for the summer. I've just returned from the 8th Meeting of for the hospital and is a constant effort for the registrars and the the Polish Association of Thermology in the mountains of Zakopane, admissions office. where most of Europe's leading medical thermographers were in attendance. Nearer to home, I also dropped into Great Ormond Street There have been several major scleroderma-related conferences so far last week to give a seminar on thermography and in 2005. The EULAR (EUSTAR) scleroderma group met in capillaroscopy in paediatric medicine. In June I shall be in Vienna for Budapest in January and ran a comprehensive course for the capillaroscopy session at the 2005 EULAR congress, and July rheumatologists interested in scleroderma. There was a meeting in sees me briefly in Glasgow, where Prof Harper from Great Ormond Seville, Spain last month which Professor Black co-chaired and Street Hospital will be presenting our work on imaging localised which highlighted important new potential treatments for scleroderma scleroderma in children. Certainly a year for collecting airmiles so complications and the advances made recently in treating pulmonary hypertension. Later in the year we will have our 10th Anniversary far! Kevin Howell
Family Day. On the preceding day we will hold our Postgraduate
scleroderma course at the Royal Free, aimed at Rheumatology Specialist Nursing News
trainees. We have some excellent speakers for these events and some have even agreed to speak at both meetings! Spring is here again and this year has brought changes for the specialist nursing team: Unfortunately, Jane will be leaving at the As ever we are hosting many international visitors to the unit. end of March to join the research and clinical trials team at the Mansoor Hosseni from Shiraz in Iran is continuing his research with Hammersmith Hospital. However, we are lucky to have two new us. In addition we are hosting a visiting rheumatology fellow from research and education nurses, Miriam and Louise, who have recently Greece for 3 months, participating in the prestigious EULAR joined the team. exchange scheme, and have had medical students from Australia and
Sweden so far in 2005 Chris Denton
We would like to take this opportunity to offer our congratulations to Rachel, and husband Nick on the safe arrival of their son, Ralph Laboratory Research -
Research continues to flourish and we have been awarded a number
of research grants over the last few months to continue our studies The following clinical trials are still on going:
into the causes of Raynaud’s and Scleroderma. In addition our work
1. SSTEP – a 5-year trial looking at the use of Iloprost tablets in
has been accepted for publication in a number of scientific journals and has been presented by members of the research staff at National lowering the incidence of heart attacks, angina and strokes. and International meetings. In particular our studies on the 2. Infliximab- patients with diffuse scleroderma receive a
development of the disease and organ-based changes was presented at minimum of 5 infusions over the course last 48 weeks. The initial part the Rheumatology meeting organised at University College in of the trial will finish by summer of this year. February and at the European meeting on systemic diseases in March. These presentations have generated much interest and discussions of 3. Quins- using quinapril tablets in the prevention of vascular
collaborative endeavours. We have 3 new members of the department damage in scleroderma. This will finish by the end of this year. Drs Rachel Hoyles, Colin Hart and Christopher Hanks and we are
about to appoint another post-doctoral scientist to the group. As we 4. Rapids 2- using a study drug bosentan and a placebo for patients
continue to advance our understanding of the underlying disease with digital ulcers.
cause(s) in Raynaud’s and Scleroderma we are presented with 5. BUILD 2 - using a study drug bosentan and a placebo in the
potential processes that may be useful targets for treatment. prevention of interstitial lung fibrosis. We have been awarded the following grants:
The Raynaud’s and Scleroderma Association- has funded a project
6. ARIES/STRIDE – For patients with pulmonary hypertension,
grant to continue supporting Dr Yun-Liang Chen. We have also been looking at a new tablet to slow down the progression of PH. awarded a clinical fellowship for Dr Hoyles. This is jointly funded by 7. EARLY – using a licensed therapy (Bosentan) to treat patients
the Association and the ARC and is a collaborative grant between the Royal Free and Prof Ron du Bois/Dr Athol Wells at the Brompton. If you are interested in taking part in future please contact Miriam,
The Arthritis Research Campaign – has funded a project grant in Louise, Helen on 020 7830 2326 or Clare/Joanna on 020 7472 6354
collaboration with Dr George Bou-Gharios at Hammersmith Hospital to study how we can inhibit collagen production in Scleroderma. The Scleroderma Society – has funded equipment and vital reagents
Family Day
2005 celebrates the 10th Anniversary of Scleroderma Family Day The Rosetrees Trust – have continued their support of our translation
— Saturday 21st May we are all very much all looking forward to research which aims to move some of our work on Raynaud’s and this special day and do hope you can join us - Please see Scleroderma into clinical trials. The Oliver Bird Rheumatism Grant – we have been awarded a
research grant in collaboration with research centres in London to Fundraising: Jason Rudolph is kindly running the London
attract young scientific investigators into the field of rheumatology . Mararthon on behalf of the Unit - please see www.justgiving.com David Abraham

Scleroderma Family Day 10th Anniversary   
Saturday 21 May 2005 
The Atrium, Royal Free Hospital 
PROGRAMME 
Registration and Coffee   
Welcome and Introduction   
Psychology of chronic diseases    
Dr R Persaud, The Maudsley Hospital  The Ends of The Spectrum –  
Childhood SSc & Localised Diseases in Adults 
Childhood Scleroderma & Raynaud’s   
Localised Scleroderma   
Calcinosis 
Scleroderma under the microscope 
Lunch—see below 
Challenges in Management 
Scleroderma—a view from the Netherlands 
Stem Cell Transplantation for scleroderma 
Neurological aspects of scleroderma 
Dr  C Moore,St Mary’s Portsmouth  Biological Therapies for Scleroderma  
Round Table Discussion ‐ Patient Advocacy in a Rare Disease 
Synergy Between Patient Organisations & Health Care Systems  
Chair:  Professor C Black/ Dr C Denton  Raynaud’s & Scleroderma Association;   Scleroderma Society; Pulmonary Hypertension Association              
Raffle 
Lunchtime Discussion Groups / Demonstrations 
Oral problems    
Dr J Buchanan, Eastman Dental Hosp 
Rheumatology Laboratory Demonstrations 

Source: http://scleroderma-royalfree.org.uk/SpringNews2005.pdf