FRESH-PEF219-en
French cystic fibrosis register (qualified register)
| Name | Country code |
|---|---|
| France | fr |
['Clinical data','Biological data','Socio-demographic data','Paraclinical data (non-biological) : Function testing']
Individuals
| Topic | Vocabulary |
|---|---|
| Pulmonary medicine | health theme |
| Cystic fibrosis | cim-11 |
| Biological determinants: Genetic predisposition | health determinant |
| Biological determinants | health determinant |
{
"level_sex_clusion_I": [
{
"value": "Male",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008297"
}
},
{
"value": "Female",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
}
}
],
"level_age_clusion_I": [
{
"value": "Infant, Newborn (birth to 28 days)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D007231"
}
},
{
"value": "Infant (28 days to 2 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D007223"
}
},
{
"value": "Child, Preschool (2 to 5 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002675"
}
},
{
"value": "Child (6 to 12 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002648"
}
},
{
"value": "Young Adult (19 to 24 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D055815"
}
},
{
"value": "Adult (25 to 44 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000328"
}
},
{
"value": "Middle Aged (45 to 64 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008875"
}
},
{
"value": "Aged (65 to 79 years)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000368"
}
}
],
"level_type_clusion_I": [
"Patients population"
],
"level_type_clusion_other": "",
"clusion_I": "The criteria for inclusion in the registry are - in addition to consent by the patient and\/or parents for data to be used - those defined by the 1998 consensus conference of the Cystic Fibrosis Foundation and reported by Rosenstein and Cutting. These combine clinical and biological criteria: 1) the presence of one or more phenotypic characteristics or a family history of cystic fibrosis among siblings, or an increased rate of immunoreactive trypsin (neonatal screening) and 2) two positive sweat tests, or two mutations identified of the CFTR gene, or a pathological nasal transepithelial potential difference. This definition of cystic fibrosis is currently being amended in the registry following the recommendations in J Ped 2008:153:S4-S14",
"clusion_E": ""
}
| Name |
|---|
| Gilles;RAULT |
| Virginie;COLOMB-JUNG |
| Name | Role |
|---|---|
| VAINCRE LA MUCOVISCIDOSE (AFLM) | sponsor |
| Name |
|---|
| CENTRE HOSPITALIER UNIVERSITAIRE DE NANTES |
| INSTITUT NATIONAL D'ETUDES DEMOGRAPHIQUES (INED) |
| VAINCRE LA MUCOVISCIDOSE (AFLM) |
['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']
Access on specific project only
Observational Study
| Start | End |
|---|---|
| 1992-01-01 | 3000-01-01 |
Data demand on : http://www.vaincrelamuco.org/ewb_pages/d/donnees_registre.php
{"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
| Name | |
|---|---|
| Gilles;RAULT | gilles.rault@ildys.org |
| Virginie;COLOMB-JUNG | vcolomb@vaincrelamuco.org |
FRESH-PEF219-en
| Name | Affiliation |
|---|---|
| Virginie COLOMB-JUNG | VAINCRE LA MUCOVISCIDOSE (AFLM) |