Latest database descriptions

To monitor patients who discontinued tyrosine kinase inhibitors for at least two years in order to determine their molecular status and collate potential late molecular relapses.

The French Society of Rheumatology (SFR) and the Patient Association ANDAR have partnered since early 2012 to disseminate a new tool (SANOIA) allowing patients to record and track their personal health data and contribute to their monitoring. This tool drives major expectations in terms of epidemiology. In fact, the information anonymously entered by the patient, about his medical condition and coping of the disease are aggregatable for research. After a phase of evaluation, SANOIA is currently deployed on two medical conditions: Survey 1: Assess the feasibility and the adoption of SANOIA a personal health record freely available for patients with rheumatoid arthritis. In December 2012, 2,902 RA patients were registered. Survey 2: Assess the feasibility and the adoption of SANOIA, a personal health diary freely accessible, which has been adapted for patients with a rare disease thrombocytopenic purpura. ". We look out to extend the tool to other medical conditions.

General objective: To generate data on diseases encountered and primary medical care provided to patients for healthcare workers and those involved in public healthcare, health economics or health service research. Secondary objectives: - To generate epidemiological data on general population requirements and their determinants such as: patient characteristics, diagnoses and treatment - To participate in research to improve knowledge concerning the efficacy, efficiency, and equity of medical practices and healthcare organisations

To assess treatment outcome (by medical, surgical and physiotherapy treatment) for patients with anal incontinence included in the ORALIA cohort and to measure any observed improvement to symptoms and quality of life. Secondary objectives: - to study the development of associated perineal disorders: constipation, urinary incontinence, sexual issues, - to estimate treatment costs proposed to patients based on their measured impact.