Latest database descriptions

- Maintain and develop the national cohort of MS patients (currently more than 40,000 patients) registered at the EDMUS format (database that can be used as an electronic medical record, specifically designed to process the data of MS patients) and enrich the clinical data currently available with biological samples, MRI data and socio-economic data.
- Provide a continuously updated "photograph" of MS in France, thus allowing a better understanding of the personal, professional and social consequences of the disease, and of the effect of disease modifying treatments (DMTs) in MS care in France. It is ideally suited for nationwide epidemiological studies on MS.
- Maintain and develop existing nested cohorts ("historical" Lyon cohort on the natural history of MS, KIDMUS cohort on MS with childhood onset, TYSEDMUS cohort on patients treated with Tysabri, etc.) and implement new ones, addressing specific issues such as pharmaco-epidemiology of recently introduced DMTs and their cost effectiveness.
To develop the new OFSEP-HD cohort

The goal of CryoStem is to create a national, multicenter, prospectie, longitudinal, standardized HSCT human-sample collection (derived from adult and pediatric patients) with the purpose of enabling better characterization and prediction of HSCT complications occurence and outcome, including GvHD.
CryoStem has generated a French network involving all the French transplant units, adult and pediatric and 28 Biological Resources Centres. Only in a network such as this may the full potential be realized of having concrete and effective interactions between scientists with top knowledge in specific areas and physicians. CryoStem fosters interactions among internationally recognized experts in advanced biotechnology (genomics,transcriptomics, proteomics, and flow cytometry).
Altogether, CryoStem provides a structured approach for a range of different research activities, bringing together leading-edge researchers who can access documented biological (CryoStem) and clinical (ProMISe) samples from transplanted patients in order to better characterize and predict HSCT complications.

The main objective is to estimate the overall survival at 24 months of patients with metastatic renal cancer, treated by first line antiangiogenic agents in real-life and investigate (for products for which sufficient data have been collected) if this differs from that reported in pivotal clinical trials that contributed to market authorisation.

to precise the natural history of musculrr, cardiac, respiratory, orthopaedic and metabolic involovements of patients suffering from laminopathies and emerinopathies.
to identify cardiovascular, neurologic and respiratory prognosis factors.
to identify obstetrical and perioperative complications related to laminopathies and emerinopathies.
to identify correlations between LMNA/EMD gene mutations and the observated phenotypes.
to have a repository ready for inclusion of patients in future therapeutic trials.