EXPLAIN -FragilE X Registry: An exPlorative Longitudinal Study for chAracterIzation, Treatment Pathways and patieNt-related Outcomes

Novartis

Status

Terminated

Conditions

Fragile-X Syndrome

Study type

Observational

Funder types

Industry

Identifiers

NCT01711606

CAFQ056BDE-EPI-01

Details and patient eligibility

About

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

Enrollment

75 patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria