FRESH-PEF8427-en
Survey Observatory of Rare Diseases 2011
| Name | Country code |
|---|---|
| France | fr |
['Participant-reported health data']
Individuals
{
"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"
}
},
{
"value": "Aged, 80 and over (80 years and more)",
"concept": {
"vocab": "MeSH",
"vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D000369"
}
}
],
"level_type_clusion_I": [
"Patients population"
],
"level_type_clusion_other": "",
"clusion_I": "Status: patients, their spouses, their children or their parents. - Pathology: prevalence rate inferior or equal to one out of 2000 people, according to the data presented in Orphanet on the prevalence of rare diseases - In the absence of a diagnosis: in this situation, or the patient is likely to be affected by a rare disease, or the situation referred to hypochondria, mythomania... The Telephone Contact and Information person was in charge of assessing whether the situation referred to by the caller corresponded to the first or the second hypothesis and wether it was worth collecting data.",
"clusion_E": ""
}
| Name |
|---|
| Thomas;HEUYER |
| Name | Role |
|---|---|
| MALADIES RARES INFO SERVICES | sponsor |
| Name |
|---|
| ASS FRANCAISE CONTRE LES MYOPATHIES (AFM) |
['Through organizations (health services or institutions, schools, businesses, etc.)']
['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']
Access on specific project only
Observational Study
| Start | End |
|---|---|
| 2011-01-01 | 2012-01-01 |
One-time cross-sectional study
Contact the principal investigator
{"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
| Name | |
|---|---|
| Thomas;HEUYER | theuyer@maladiesrares.org |
FRESH-PEF8427-en
| Name | Affiliation |
|---|---|
| Thomas HEUYER | MALADIES RARES INFO SERVICES |