SANOIA : An online Patient Personal Health Record FRESH-PEF5201-en Laurent CHICHE SANOIA : An online Patient Personal Health Record SANOIA FRESH-PEF5201-en 5201 FRESH-PEF5201 Adam SELAMNIA Hervé SERVY E-HEALTH SERVICES SANOIA Epidemiology France Portal (PEF) AMGEN CENTRE NATIONAL DE LA RECHERCHE SCIENTIFIQUE (CNRS) UCB PHARMA (FRANCE) null Adam;SELAMNIA Hervé;SERVY Rheumatology Patient reported Outcomes (PRO) treatment RAID score RAPID-3 score quality of life Electronic Health Data Hematology Rheumatology Behavioral determinants Healthcare system determinants: Use of care Healthcare system determinants 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. null France Individuals Patients population Male Female Young Adult (19 to 24 years) Adult (25 to 44 years) Middle Aged (45 to 64 years) Aged (65 to 79 years) Aged, 80 and over (80 years and more) Patients with rheumatoid arthritis, adult fulfilling the ACR criteria for classification (1987, American College of Rheumatology) with Internet access (Survey 1) Patients aged between 18 and 75 years diagnosed with chronic thrombocytopenic purpura according to international guidelines, with permanent access to the Web, and without psychiatric disorder (Survey 2). Participant-reported health data Health event/morbidity Health care consumption and services Quality of life/health perception Other Through organizations (health services or institutions schools businesses etc.) [1000-10000[ individuals Interview with the participant (including clinical) Observational Study Observational Study n = 56 for RA Patients. Extended to 2,902 patients in December 2012n = 72 for ITP Patients Unknown Restricted access Open to any organization Research, private or public, but subject to instruction for an ethical notice issued by the French Society of Rheumatology. Access on specific project only