Informationen for Patients
DeSScipher has started!
Dear people with systemic sclerosis,
on the 1th March 2013 the 1st international EU-funded research project for systemic sclerosis “DeSScipher” has started.
What is DeSScipher about?
DeSScipher is the acronym for ”to decipher the optimal management of systemic sclerosis”.
Aim of this international research project is to enhance the treatment strategies for people with Systemic Sclerosis and therefore to improve the quality of life in the future. DeSScipher is currently the largest project ever for systemic sclerosis, and mainly consists of five observational, non-interventional studies, carried out over a period of at least 3 years.
What does “observational” mean?
Contrary to an interventional study, which is a “planned study” on patients, e.g. to compare a novel drug vs. placebo for a disease, an observational study addresses similiar questions, investigating the effects of licensed drugs in the reallife care for patients. In an observational study, a patient’s disease and organ-manifestations are therefore only monitored very closely to explore, whether an existing treatment may be beneficial or not. The patient stays on his or her individual medication, she/he is in routine clinical practice, and this medication is only changed by the patient’s medical needs, but not for participation in the observational trial.
Which organ manifestation 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 heart disease (observational trial 5). However, even these are the main objectives, several other relevant clinical questions will also be addressed based on a large cohort of patients.
Where can I get more Information about DeSScipher?
We have created a short information brochure, which can be downloaded here. Currently, this information is only avaliable in english and german. However, this brochure will be translated into several european languages, so you will be able to download this brochure in your language soon.
How can I participate to DeSScipher?
Every health care centers can include people with systemic sclerosis in the DeSScipher project. Contact details of currently participating centers can be found on this homepage (here). If your center is not already listed, and you want to participate, please ask your physician, if your health care center wants to contribute to DeSScipher.
As FESCA is a founding partner of DeSScipher, the national FESCA representative or your local systemic sclerosis association may provide you with some additional information. Of course, you can also find more information on this homepage. If you want to directly contact the central coordination center of DeSScipher for help, please use the contact formular or guestbook (here).
We hope, this information was helpful for you. We are grateful to every person with systemic sclerosis participating in the DeSScipher project, helping to make DeSScipher a success in finding the optimal management of systemic sclerosis.
This project is not about “research on you”, but wants to provide “research for you” to improve the quality of life for people with systemic sclerosis.
Kind regards,
For the DeSScipher research team
Prof. Dr. med. U. Müller-Ladner
Dr. med. I. Tarner
Dr. med. M. Frerix