Quality of Life of Patients and Theirs Parents With Inherited Metabolic Diseases With Restricted Diet (MHMRSQol)
Inherited Metabolic Diseases Requiring Restrictive and Specific Diet
About this trial
This is an interventional other trial for Inherited Metabolic Diseases Requiring Restrictive and Specific Diet
Eligibility Criteria
Inclusion Criteria:
Included in MHMRS databases from different centers
- Age less than 18 years at diagnosis
- Diagnostic MHMRS made from 01/01/2000
- Treatment and management of MHMRS initiated in one of the clinical sites
Living in France
- Living
- Compliance with criteria for inclusion in the cohort
- Having agreed to participate in the study
- Allowed to participate in the study by the parents or legal guardians for any minor subject.
Exclusion Criteria:
- Can't be included subjects not complying with at least one of the inclusion criteria previously mentioned .
Excludes all subjects at least one of the following criteria:
- Moving outside France after baseline ( initial treatment performed in one of the participating centers )
- Withdrawal of consent / refusal of monitoring;
- Not responding at three successive waves of investigation.
Sites / Locations
- Hôpital de la Timone Assistance Publique Hôpitaux de MarseilleRecruiting
Arms of the Study
Arm 1
Experimental
patients and their parents with inherited metabolic diseases
The population is a dynamic/open cohort consists of all patients MHMRS diagnosed and supported in one of the six Centers of Reference for Metabolical disease or one of the three Centers of Competence for Hereditary Metabolic Diseases or in the Center of Réference for Hereditary liver Metabolism Diseases since 2000. For each patient, the date of entry into the cohort is the diagnostic date of MHMRS. The study includes all prevalent and incident cases .