The Desscipher project is closing to it’s end

Since the start the latest recruitment (1st April 2013 till 21st July 2015) of the five observational trials is: nearly 2089 patients with systemic sclerosis have been screened and 1862 patients have been enrolled into the trials for primary analysis.

Thus, with the help of FESCA and other contributing centers the DeSScipher project had become the largest prospective observational research project ever on systemic sclerosis!

The main contributing EUSTAR centres are from Italy, Switzerland, UK. Hungary, France, Spain, Croatia, Germany, Russia, Romania, Turkey, Egypt.

Please find the detailed patient recruitment numbers for all OT (observational trial) and the center below.

Number of patients enrolled into the observational arms of all OTs

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What is the DeSScipher project?

DeSScipher is the 1st international EC-funded research project, and currently also the largest project, on the rare disease systemic sclerosis (SSc). DeSScipher aims to decipher the optimal management of systemic sclerosis. The goals of this project are to improve the treatment strategies for people with systemic sclerosis, and thus to help affected patients to get more quality of life. The projects comprises five observational, non-interventional studies which started in April 2013 and have been designed to cover different evolution phases of the disease from early, functionally relevant manifestations such as digital ulcers and hand arthritis to later, more severe organ manifestations such as interstitial lung disease, pulmonary hypertension and severe heart disease. Moreover, DeSScipher aims to improve the education of people with systemic sclerosis and physicians, and ultimately to achieve a better care for patients by the development of accepted evidence-based clinical guidelines.

The activities of FESCA within the DeSScipher project

FESCA aisbl. is a full partner of the DeSScipher project and deeply involved since the very beginning of the five observational trials. The main task of FESCA is to actively disseminate the research project in Europe and in its member countries. To introduce the project the main launch activities were in 2013 but some member countries joined to communicate the project in 2014. FESCA supported the project through its World Scleroderma Day in 2013, 2014 and 2015. In this year DeSScipher was highlighted in the EU Pariament Event in Brusseles where WSD was celebrated.

Next steps

The project will come to  the end in 30th November 2015.

The closer event of this huge project is the Dissemination Meeting of Project DeSScipher in Bad Nauheim in Germany from 27-29th November. All the participants of the project, the representatives and physicians of the involved clinics, representatives of FESCA are invited to the event. In this meeting a detailed report about the results of the separate OTs (Observational Trials) will be introduced.

After the results are ready to distribute FESCA task will be to help disseminate the outcome among our member countries in 2016.

Thank you for the contribution of our member associations to help achieving this great number of participation to make this project successful.

 

Beata Garay Toth
Vice-president, FESCA
DeSScipher representative

The Men’s Room at the World Scleroderma Congress

In scleroderma the majority of patients are women, so that it looks as if there is less attention to men in daily functioning. Generally there is an agreement that men and women are different and this can generate the question ‘Does anxiety/depression manifest itself in men as often as in women with scleroderma?

When it comes to the occurrence of these feelings, there is generally no difference between men and women. However, there may be a difference in the way they express them and cope with them. Influenced by education and other social and cultural factors, it seems that women are still more at ease, than men, to express emotions that indicate “vulnerability”. Although differences in this respect may have become smaller in the past decades, they still persist. Scientific literature does not give a clear answer to this question.

Only a couple of studies focusing on depression/anxiety in people with scleroderma exist. In one of them, women reported more depression but in another there were no sex differences for depression, only anxiety was reported as more present in women.

A men-only group encourages male patients to speak about different scleroderma-related issues happening in their lives. It can be easier to talk about daily life matters in a group that experience the same difficulties, frustrations and worries. Being in a group of same-sex participants can give a safer feeling of understanding and support, as well as enhancing participation and openness.

This approach was used in Rome at the Systemic Sclerosis World Congress, where a small group of men joined to share their stories, daily difficulties, and the solutions they sometimes found to work for them. Topics we discussed were very diverse and it helped us see things differently.

A men-only session will be planned for the next 4th Systemic Sclerosis World Congress in Lisbon and I hope to see a large group of participants willing to share their experience so we (men) can all learn from these experiences and allow all participants to benefit from them. Finally, from my experience and from the feedback I got from other participants, sharing in a men’s session helped us feel supported, understood and not alone.

We will be waiting for you.

Joep Welling
Member of FESCA aisbl board

For more information on the next Systemic Sclerosis World Congress in Lisbon – please go here. 

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Mini newsletter from Fesca

Our latest newsletter, which is a mini newsletter on recent events involving Fesca is ready. Another newsletter on our members activities for this year’s World Scleroderma Day is on its way.

For download of newsletter : 2015 September – mini newsletter

 

PRESS RELEASE – FESCA holds event in EU Parliament, June 2015

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To celebrate World Scleroderma Day 2015, the Federation of European Scleroderma Associations (FESCA aisbl.) held the European Parliamentary event “Unveiling Scleroderma: Hidden Truth” on June 30 in Brussels. All MEPs were invited to this EU Parliament meeting to listen as the invited experts spoke about the quality of care available for scleroderma patients across Europe.

Hosted by James Carver MEP, who lost his wife to scleroderma in 2009, the event provided a unique forum for patients, physicians, and politicians to share their stories and understanding.

Key medical professionals from across Europe highlighted the importance of early diagnosis, sufficient investment in research and specialist centres, and equity of care. The presentations on these topics included insightful talks from Professor Denton (UK), Professor Distler (Switzerland), Dr. Posada De la Paz (Spain) and Professor Van den Hoogen (Netherlands). These key rheumatologists spoke of how although the effects of scleroderma can be devastating, proper treatment and management will enable people with scleroderma can lead full and rewarding lives.

The MEPs attending were also privileged to hear from a number of patients themselves, from Denmark, the Netherlands, Hungary and the UK, who shared with the audience inspiring stories of their difficult journeys with scleroderma. EULAR representative Nele Caeyers spoke of the support that is given to FESCA by the EU’s major rheumatology organisation.

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World Scleroderma Day 2015 was developed by FESCA to raise awareness of the 2.5 million people currently diagnosed worldwide who live with this rare and under-recognised disease. Its success is due to the commitment of all the national patient support and advocacy groups who form part of the umbrella organisation.

Ann Tyrrell Kennedy, President of FESCA, said “World Scleroderma Day was a huge success and it has been encouraging to see awareness of scleroderma gaining momentum across Europe. It’s so important that we make the journey to a diagnosis as short as possible, and having the support of politicians and physicians alongside patient groups is a really important step to improving millions of lives across the world.”

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For more information please contact www.fesca-scleroderma.eu

Watch the event on Youtube

 

 

Interview on World Scleroderma Day 2015

Watch a specially recorded message for World Scleroderma Day 2015 by Ms. Ramona Kanters, founder of the patient support group in the Netherlands, and learn about the everyday impact of Scleroderma.

The interview is recorded by Actelion and published on their Youtube channel.

Unveiling Scleroderma

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This World Scleroderma Day 2015 we will be “unveiling Scleroderma”.

Organisations across the globe are taking part in the campaign to raise awareness for 2.5 million individuals diagnosed with scleroderma worldwide.

25 seconds for 2.5 million

You can help us raise awareness by recording a 25-second video about your experience of scleroderma and sharing with your social networks. Use the hashtags to view your video on the main WSD website. #WSD15 #unveilscleroderma #scleroderma #worldsclerodermaday

Help us create change

On the 30th June FESCA aisbl will be unveiling scleroderma at European Parliament, Brussels. This event aims to raise awareness amongst MEPs, policy makers and stakeholders to tackle inequity of care and ensure every scleroderma patient in Europe has access to quality care.

Support this event by signing the pledge on the World Scleroderma Day website.

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Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard), 34.6 x 21.2 cm, Zentrum Paul Klee, Bern.

Paul Klee, Kettledrummer 1940, 270 (coloured paste on paper on cardboard), 34.6 x 21.2 cm, Zentrum Paul Klee, Bern.

The gifted Swiss artist Paul Klee made painting his life’s work, but it was strongly influenced by his scleroderma, as this painting chosen as icon for the first World Scleroderma Day demonstrates.

He died June 29, 1940.

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Download the poster for destribution: World Scleroderma Day 2015 Poster

Actemra Looks Promising in Scleroderma

Encouraging results were seen for tocilizumab (Actemra) in the treatment of diffuse systemic sclerosis (SSc) in a proof-of-concept study by Christopher P. Denton, MBBS, of University College Londo.

At 24 weeks, a numerically favorable response was seen on modified Rodnan skin scores and lung fibrosis among patients randomized to tocilizumab compared with those receiving placebo. The study is now continuing with a phase III trial that includes a greater number of patients.

 

Read the entire article at MedpageToday.com>>

 

Scleroderma Healthcare Report

Sclerodermie Advies & Voorlichting (Scleroderma Recommendation & Information – SAV) initiated the Scleroderma Healthcare study in 2013.

The principal reason was that the owner of SAV, Ramona Kanters, suffers from this disease and has made it her life objective to improve healthcare and quality of life in scleroderma. In this setting up to 200 patients were interviewed and the team administered a questionnaire.

The questionnaires were analyzed for 65 of these patients, 59 female and 6 male.

Read the whole report by Ramona Kanters and Mieke Rovers.
PDF: Scleroderma Healthcare Report 

For more information, please visit the Sclerodermie Advies & Voorlichting website.

2014 Fesca Newsletter

Please find below the latest FESCA newsletter with all sorts of stories from around Europe and some other interesting articles.

In this newsletter we bring you an update on how World Scleroderma Day 2014 was held in many European counties, wake-up call to us all, the DeSScipher project and much more.

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2014 Fesca newsletter

Please click here for more newsletters.

A gender gap in primary and secondary heart dysfunctions in systemic sclerosis: a EUSTAR prospective study

The diagnostic rate of systemic sclerosis demonstrates a strong gender bias. EUSTAR performed recently a prospective observational study using the latest 2013 data extract from the EULAR scleroderma trials and research (EUSTAR) cohort.

The study concluded that although more common in women, systemic sclerosis appears as strikingly more severe in men.

Read the abstract here.