DEFI - Determination of epidemiology of fibromyalgia 
Head :
Millet Véronique, Pfizer
Last update : 01/01/2019 | Version : 1 | ID : 112
| General | |
| Identification | |
| Detailed name | Determination of epidemiology of fibromyalgia |
| Sign or acronym | DEFI |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL N° 908059, CPP 29/10/2007 |
| General Aspects | |
| Medical area |
Neurology |
| Others (details) | Fibromyalgia |
| Keywords | fibromyalgia prevalence |
| Scientific investigator(s) (Contact) | |
| Name of the director | Millet |
| Surname | Véronique |
| Address | 23- 25 avenue du Dr Lannelongue, 75668 paris cedex 14 |
| Phone | +33 (0)1 58 07 334 12 |
| veronique.millet@pfizer.com | |
| Unit | Pfizer |
| Collaborations | |
| Funding | |
| Funding status |
Private |
| Details | Pfizer |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Pfizer |
| 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 A population file |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Random selection via the telephone directory |
| Database objective | |
| Main objective |
Main: - Evaluate the prevalence of fibromyalgia in the general population, in five ""French regions"", by identifying: • in a first step, by telephone, potential or known fibromyalgia patients, • then in a second step, from among these patients, those that have fibromyalgia validated by a rheumatologist. Secondary: - Describe the characteristics of the patients with a diagnosis of fibromyalgia validated by a rheumatologist. - Describe the characteristics of patients for whom this diagnosis has not been validated by the rheumatologist. - Compare the characteristics of these two groups of patients to one another and each of them with the characteristics of the general population of the study. |
| Inclusion criteria |
- Patients aged 18 years or older. - Patients deemed apt to answer the questions. - Randomly selected patients who accept to participate in the survey (in the event of a refusal, the selected person was not replaced within the home or in the study)." |
| 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 |
General population |
| Gender |
Male Woman |
| Geography area |
Regional |
| French regions covered by the database |
Auvergne Rhône-Alpes Bretagne Île-de-France Languedoc-Roussillon Midi-Pyrénées Nord - Pas-de-Calais Picardie |
| Detail of the geography area | The towns of Lille, Grenoble, Toulouse and the departments of Val-de-Marne and Ille-et-Vilaine |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2008 |
| Date of last collection (YYYY or MM/YYYY) | 2009 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 2849 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Declarative data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Declarative data (detail) |
Paper self-questionnaire Face to face interview Phone interview |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity |
| Procedures | |
| Data collection method | Telephone and paper |
| Participant monitoring |
Yes |
| Details on monitoring of participants | 1 month |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Methods for accessing the database are currently being defined |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
