CARMEN - AUTOIMMUNE CYTOPENIA REGISTRY IN MIDI-PYRENEÉS REGION

Head :
Moulis Guillaume, UMR INSERM-Université de Toulouse 1027, équipe 6
Adoue Daniel

Last update : 11/10/2017 | Version : 1 | ID : 5294

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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General
Identification
Detailed name AUTOIMMUNE CYTOPENIA REGISTRY IN MIDI-PYRENEÉS REGION
Sign or acronym CARMEN
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL no. 2012-438; CCTIRS no. 12.067
General Aspects
Medical area Hematology
Immunology
Pathology (details) immune thromboctyopenia, autoimmune hemolytic anemia
Health determinants Iatrogenic
Medicine
Keywords immune thromboctyopenia, autoimmune hemolytic anemia, registry, epidemiology, pharmacoepidemiology
Scientific investigator(s) (Contact)
Name of the director Moulis
Surname Guillaume
Address Faculté de Médecine, 37 allées Jules Guesde 31000 Toulouse
Phone + 33 (0)5 61 77 96 78
Email moulis.g@chu-toulouse.fr
Unit UMR INSERM-Université de Toulouse 1027, équipe 6
Organization INSERM - Institut National de la Santé et de la Recherche
Name of the director Adoue
Surname Daniel
Email adoue.d@chu-toulouse.fr
Collaborations
Participation in projects, networks and consortia Yes
Details MaRIH
Funding
Funding status Mixed
Details Toulouse university hospital, French Society of internal medicine, CSL Behring, Novartis
Governance of the database
Sponsor(s) or organisation(s) responsible Toulouse university hospital
Organisation status Public
Sponsor(s) or organisation(s) responsible INSERM - Institut National de la Santé et de la Recherche Médicale
Organisation status Public
Presence of scientific or steering committees Yes
Additional contact
Main features
Type of database
Type of database Morbidity registers
Additional information regarding sample selection. Investigators prospectively include all newly diagnosed adult patients for ITP of AIHA
Database objective
Main objective To describe the epidemiology of immune thrombocytopenic purpura (ITP) and of autoimmune hemolytic anemia (AIHA) , real-life exposure to treatments and their risk-benefit ratio.
Inclusion criteria - aged 18 or over
- outvisit or hospitalisation for ITP or AIHA diagnosis
- no oppsition to participate
- followed in the Midi-Pyrénées region
Population type
Age 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
Pathology D69 - Purpura and other haemorrhagic conditions
D59 - Acquired haemolytic anaemia
Gender Male
Woman
Geography area Regional
French regions covered by the database Languedoc-Roussillon Midi-Pyrénées
Detail of the geography area Midi-Pyrénées (Occitanie West)
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2013
Date of last collection (YYYY or MM/YYYY) 2023
Size of the database
Size of the database (number of individuals) < 500 individuals
Details of the number of individuals 298 at december 31,2016
Data
Database activity Current data collection
Type of data collected Clinical data
Declarative data
Paraclinical data
Biological data
Clinical data (detail) Direct physical measures
Medical registration
Declarative data (detail) Paper self-questionnaire
Paraclinical data (detail) At diagnosis and during follow up if any event occurs
Biological data (detail) At diagnosis and during follow up
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Health care consumption and services
Quality of life/health perception
Care consumption (detail) Hospitalization
Medical/paramedical consultation
Medicines consumption
Procedures
Data collection method Follow-up forms will be completed by the investigating physician upon each patient consultation or hospitalisation at the investigating centre
Quality procedure(s) used Check of data by medical record review by Reserch Assistant and medicine doctor specilized in autoimmune cytopenia if necessary
Participant monitoring Yes
Monitoring procedures Monitoring by contact with the referring doctor
Details on monitoring of participants 10 years
Links to administrative sources Yes
Linked administrative sources (detail) SNIIR-AM for completeness assessment
Promotion and access
Promotion
Link to the document published_article.pdf
Description Study protocol
Link to the document Moulis_et_al-2017-American_Journal_of_Hematology.pdf
Description Epidemiology of ITP
Access
Terms of data access (charter for data provision, format of data, availability delay) Consult person in charge.
registre.carmen@chu-toulouse.fr for all operational information.
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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