A medical research project about standards of care for those with scleroderma, under EUSTAR doctors. FESCA is included as a partner for this proposal and will participate in discussions, and disseminate the results, as per budget.
What is DeSScipher about?
DeSScipher is the acronym for “to decipher the optimal management of systemic sclerosis”. The aim of this project is to improve the treatment strategies for systemic sclerosis, and therefore to increase quality of life in the future. It is an international project of five observational, non-interventional studies, conducted over a period of at least 3 years.
What does “observational” mean? In contrast to an “interventional” study, which is a “planned study” on patients that, for example, compares a novel drug vs. placebo for a disease, an observational study addresses similar questions, investigating the effects of licensed drugs in real-life care for patients, but an observational study only monitors closely a patient’s disease, not intervening, and explores in this way whether an existing treatment may be beneficial or not. The patient stays on his or her individual medication, in routine clinical practice, and this medication is only changed by the patient’s medical needs, and not for reasons relating to participation in the observational trial.
Which organ manifestations will be investigated in DeSScipher?
The five observational trials are designed to cover different evolution phases of the disease from early functionally relevant manifestations such as
- digital ulcers (observational trial 1) and
- hand arthritis (observational trial 2), to
- later more severe organ manifestations such as interstitial lung disease (observational trial 3),
- pulmonary hypertension (observational trial 4), and
- severe heart disease (observational trial 5).
However, while these are the main objectives, several other relevant clinical questions will also be addressed based on a large cohort of patients.
How can I participate in DeSScipher?
Originating from the leading DeSScipher partner centres, every EUSTAR centre and also all other SSc patient care centres can include their patients. Contact details of currently participating centres are provided on the homepage. If your centre has not already contributed to DeSScipher, and you want to participate, just ask if they wish to become a contributing centre. If you want to directly contact the central coordination centre of DeSScipher for help, our email is DeSScipher@uni-giessen.de.
As FESCA aisbl is also a founding DeSScipher partner, the national FESCA representative or your local SSc patient association can provide you with additional information. (Find your local European patient association here).
We hope this information is helpful to you, and that you will want to participate in driving forward the success of the DeSScipher Project. This study should not be “science on you”, but “science for you” to improve the quality of your daily life.
For the DeSScipher research team
Prof. Dr. med. U. Müller-Ladner, Dr. med. I. Tarner and Dr. med. M. Frerix
World Scleroderma Day
Having a disease that nobody has heard of is a lonely business. When even the doctors cannot recognise it, or tell you what is going to happen, it is lonelier still. So World Scleroderma Day was created to tell people, including the medical community, what it means to have this disabling disease. June 29 is a day to recognise the bravery of those who live with scleroderma, and to demand equal treatment and equal care for people with scleroderma across Europe.
Every year, on June 29, we campaign for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases.