Latest database descriptions

The French Gaucher disease registry

September 04 2015

- Carry out a descriptive epidemiological analysis of the population suffering from Gaucher's disease in France (prevalence estimated at 1/100,000) which makes it possible to describe the natural history of the disease, apprehend and analyze the care practices, and evaluate them.
- Develop lines of research:
* Epidemiology and modeling of the change in biological and clinical markers with and without treatment
* Pregnancy and Gaucher's disease
* Parkinson's disease and Gaucher's disease
* Monoclonal peak and Gaucher's disease
* Type-3 Gaucher's disease
* Gaucher's disease in children
- Evaluate the efficacy and the tolerance of the treatments, optimize them and carry out pharmacoeconomic studies
- Establish any genotype-phenotype relations
- Detect predictive factors of complications and identify the biomarkers making it possible to follow the disease with and without treatment
- Select the patients for new therapeutic options

Information System Medicalization Program for follow-up and rehabilitation care

April 09 2015

PMSI is a tool for medico-economic analysis of hospital activity. Its main purpose is to describe hospital activity to enable a better division of budgetary envelopes, according to the medical and economic complexity of the pathologies treated in each establishment. By its medical-administrative content, it allows to study hospital morbidity and its caring (diagnosis and actions), and the analysis of regional and interregional fluxes of hospitalizations. It's finally used as an internal management tool for some health establishments.

A collection of synthetic medical information respecting a normalized format has been created for hospitalizations into structures having an authorized activity in follow-up and rehabilitation care. The object of this collection and its treatment is to allow a quantified description, in medical terms, of the activity of the establishment and, on the other hand, through an algorithm based on the information contained in the collection, to group the hospital stays in defined sets, which could found a part of the financing of the establishments.

The collection concerns every kind of hospital stay, complete or partial, in public or private establishments. The collect rules are regularly established. For public or private establishments participating to hospital public service, the collect began the 1st July 1998, and for other private establishments from 1st July 2003. The specificities of the PMSI-SSR (FRC) collect are the following: - recaps are constituted per calendar week, from Monday to Sunday. A FRC hospital stay is covered by one pr more standardizes weekly recaps (SWR, RHS in French). - Three professional categories participate to the collect: doctors (diagnosis and medical actions), nurses (dependence score/Everyday activities grid), reeducators (rehabilitation and readaptation acts)

Prospective Cohort of Patients Receiving Neoadjuvant Chemotherapy for Breast Cancer

April 09 2015

General objective: To evaluate the medical, clinical, biological and therapeutic characteristics of breast cancer patients receiving neoadjuvant chemotherapy Secondary objectives: - To evaluate the long-term impact of therapeutic schemas on recurrence-free overall survival; - To validate the current prognostic scores from a U.S. population on an independent French cohort; - To identify prognostic variables and select those relevant to the establishment and evaluation of a new score from our database to reflect new biological data (Chevallier and Sataloff scores and molecular classification); - To compare the prognostic qualities of the new score to the U.S. score; - To conduct an external validation of these scores (through collaboration with the Institut Gustave Roussy team in Villejuif and the Institute Bergonie team in Bordeaux); - To isolate genetic (constitutional), genomic (tumour) or immunohistological factors with predictive power for treatment response and prognosis.

Enquête Nationale Périnatale

April 09 2015

This survey's objectives are to:
- find out the main health condition indicators, medical practices
during pregnancy and delivery and perinatal risk factors; it will
thus be possible to monitor their trends from previous national surveys
(1995, 1998 and 2003);
- provide a national sample with which it is possible to compare
département or regional data from other sources;
- provide information for guiding public health decisions and evaluate
health actions in the perinatal field.

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