RaDiCo-MPS - Mucopolysaccharidosis patients in France in the era of specific therapeutics
France, 2017
Identification
FRESH-PEF74146-en
RaDiCo-MPS - Mucopolysaccharidosis patients in France in the era of specific therapeutics
RaDiCo-MPS
| Name | Country code |
|---|---|
| France | fr |
['Clinical data','Participant-reported health data','Biological data','Paraclinical data (non-biological) : Imaging','Paraclinical data (non-biological) : Function testing']
Individuals
Scope
| Topic | Vocabulary |
|---|---|
| Cardiology and vascular medicine | health theme |
| Endocrinologie | health theme |
| Neurology | health theme |
| Dentistry | health theme |
| Ophthalmology | health theme |
| Otolaryngology | health theme |
| Paediatrics | health theme |
| Pulmonary medicine | health theme |
| Rheumatology | health theme |
| No specific medical specialty | health theme |
| Mucopolysaccharidosis | cim-11 |
Coverage
{
"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"
}
}
],
"level_type_clusion_I": "People with disabilities",
"level_type_clusion_other": "",
"clusion_I": "",
"clusion_E": ""
}
Producers and sponsors
| Name |
|---|
| Thierry;BILLETTE DE VILLEMEUR |
| Name |
|---|
| INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM) |
Sampling
Sample frame
['Through organizations (health services or institutions, schools, businesses, etc.)']
['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']
Survey instrument
Access on specific project only
Observational Study
Data collection
| Start |
|---|
| 2017-01-01 |
- {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}
- {"concept":{"vocabURI":"Transcription","vocab":"CESSDA"},"value":"Converting or copying information into a structured record"}
Study activities
Quality standards
['Data Management Plan and Data Validation Plan. Continuous data management (automatic control rules and query system)']
Data Access
Requests for access to RaDiCo-MPS data (aggregated or individual) will be considered by the Scientific Committee following the submission of a summary of a specific research project, as defined in the Charter of access to resources.
{"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
Metadata production
FRESH-PEF74146-en