Trials / Terminated
TerminatedNCT01711606
EXPLAIN -FragilE X Registry: An exPlorative Longitudinal Study for chAracterIzation, Treatment Pathways and patieNt-related Outcomes
EXPLAIN - FragilE X Registry: An exPlorative Longitudinal Study for chAracterIzation, Treatment Pathways and patieNt-related Outcomes
- Status
- Terminated
- Phase
- —
- Study type
- Observational
- Enrollment
- 75 (actual)
- Sponsor
- Novartis Pharmaceuticals · Industry
- Sex
- All
- Age
- —
- Healthy volunteers
- Not accepted
Summary
This prospective observational study (registry) on Fragile X syndrome (FXS) is designed to evaluate characteristics, management and patient and caregiver-related outcomes the quality of life of Families and patients with FXS and to collect epidemiological and health economic data. * EXPLAIN will report current and comprehensive data onEpidemiology data on fragile X syndrome * Characterisation of the phenotype of FXS patients * Description of patient characteristics (demographics, family history, comorbidity, education, working situations, care situations, insurance status) * Documentation of therapeutic interventions * Recording and assessment of psychosocial parameters (possibly also inclusion of family members, carers) * quality of life of the carer and if possible the patient * Health economic parameters and consumption of resources
Conditions
Timeline
- Start date
- 2013-03-01
- Primary completion
- 2016-01-01
- Completion
- 2016-01-01
- First posted
- 2012-10-22
- Last updated
- 2016-03-03
Locations
1 site across 1 country: Germany
Source: ClinicalTrials.gov record NCT01711606. Inclusion in this directory is not an endorsement.