ITMO public health
Last update : 07/22/2015 | Version : 3 | ID : 5201
| General | |
| Identification | |
| Detailed name | SANOIA : An online Patient Personal Health Record |
| Sign or acronym | SANOIA |
| General Aspects | |
| Medical area |
Hematology Rheumatology |
| Keywords | Rheumatology ; Patient reported Outcomes (PRO) ; treatment; RAID score, RAPID-3 score ; quality of life, Electronic Health Data |
| Scientific investigator(s) (Contact) | |
| Name of the director | Servy |
| Surname | Hervé |
| Address | 1160 Avenue Guillaume Dulac |
| Phone | + 33 (0)671319917 |
| hservy@sanoia.com | |
| Organization | AIMSU - Association pour l'Information Médicale en Situations d'Urgences - |
| Name of the director | Selamnia |
| Surname | Adam |
| Address | 1160 Avenue Guillaume Dulac |
| Phone | + 33 (0)6 07 13 29 20 |
| mselamnia@sanoia.com | |
| Organization | AIMSU - Association pour l'Information Médicale en Situations d'Urgences - |
| Collaborations | |
| Funding | |
| Funding status |
Mixed |
| Details | Fonds européens et de valorisation de la Recherche CNRS (incubateur)Bourse UCB France ; Nordic AMGEN - Recherche et développement de médicaments issus de la biotechnologie |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | AIMSU - Association pour l'Information Médicale en Situations d'Urgences - SANOIA |
| Organisation status |
Private |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Longitudinal study (except cohorts) |
| Database recruitment is carried out by an intermediary |
A selection of health institutions and services |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Survey 1: Sample of patients fulfilling the criteria (Rheumatoid Arthritis) among patients in the rheumatology department of Hôpital Sainte Marguerite, University Hospital of Marseille and private rheumatologists in the PACA region. Survey 2: Sample of patients hospitalized Idiopathic Thrombocytopenic Purpura (ITP) between 2000 and 2010 in Hôpital de la Conception, University Hospital of Marseille. |
| Database objective | |
| Main objective | 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. |
| Inclusion criteria | 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). |
| Population type | |
| Age |
Adolescence (13 to 18 years) Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) Elderly (65 to 79 years) Great age (80 years and more) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | France |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2010 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | n = 56 for RA Patients. Extended to 2,902 patients in December 2012n = 72 for ITP Patients |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Declarative data |
| Declarative data (detail) |
Paper self-questionnaire |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health care consumption and services Quality of life/health perception |
| Care consumption (detail) |
Hospitalization Medical/paramedical consultation Medicines consumption |
| Procedures | |
| Data collection method | Survey 1: The contents of the SANOIA patient Health Datasheet in the study, completed alone or with assistance according to the group assignment, was compared for three months to the contents of their medical records, held by their rheumatologist-according to the completeness of information on treatment, comorbidities and history. Survey 2: demographic and medical data, as well as the evaluation of the quality of life related to health using the electronic Health Datasheet SANOIA were assessed at baseline and at 1, 3 and 6 months via questionnaire sent by postmail. The use of SANOIA Health Datasheet was evaluated by a specific questionnaire and by measuring the frequency of weblogs of each patient. |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Voice call |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/?term=%28Servy+H[author]+OR+Selamnia+A[author]%29+AND+SANOIA |
| Description | List of publications in Pubmed |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Open to any organization Research, private or public, but subject to instruction for an ethical notice issued by the French Society of Rheumatology. |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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