4.2 Article

Exploring quality of life in individuals with a severe developmental and epileptic encephalopathy, CDKL5 Deficiency Disorder

Related references

Note: Only part of the references are listed.
Article Clinical Neurology

Comparison of Core Features in Four Developmental Encephalopathies in the Rett Natural History Study

Clare Cutri-French et al.

ANNALS OF NEUROLOGY (2020)

Article Behavioral Sciences

Reliability of the Quality of Life Inventory-Disability Measure in Children with Intellectual Disability

Peter Jacoby et al.

JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS (2020)

Review Clinical Neurology

Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: Clinical Review

Heather E. Olson et al.

PEDIATRIC NEUROLOGY (2019)

Article Psychology, Developmental

Content validation of the Quality of Life Inventory-Disability

Amy Epstein et al.

CHILD CARE HEALTH AND DEVELOPMENT (2019)

Article Genetics & Heredity

A framework for understanding quality of life domains in individuals with the CDKL5 deficiency disorder

Jodilee Tangarorang et al.

AMERICAN JOURNAL OF MEDICAL GENETICS PART A (2019)

Article Health Care Sciences & Services

Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure

Jenny Downs et al.

QUALITY OF LIFE RESEARCH (2019)

Article Psychology, Developmental

Comparing Parental Well-Being and Its Determinants Across Three Different Genetic Disorders Causing Intellectual Disability

Yuka Mori et al.

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS (2018)

Article Behavioral Sciences

Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome

Nada Murphy et al.

JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS (2017)

Article Genetics & Heredity

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Yuka Mori et al.

ORPHANET JOURNAL OF RARE DISEASES (2017)

Article Genetics & Heredity

&ITCDKL5&IT variants Improving our understanding of a rare neurologic disorder

Ralph D. Hector et al.

NEUROLOGY-GENETICS (2017)

Article Genetics & Heredity

Conceptualizing a Quality of Life Framework for Girls with Rett Syndrome Using Qualitative Methods

Amy Epstein et al.

AMERICAN JOURNAL OF MEDICAL GENETICS PART A (2016)

Article Genetics & Heredity

Functional Abilities in Children and Adults with the CDKL5 Disorder

Stephanie Fehr et al.

AMERICAN JOURNAL OF MEDICAL GENETICS PART A (2016)

Article Genetics & Heredity

Prevalence and onset of comorbidities in the CDKL5 disorder differ from Rett syndrome

Meghana Mangatt et al.

ORPHANET JOURNAL OF RARE DISEASES (2016)

Article Clinical Neurology

There is variability in the attainment of developmental milestones in the CDKL5 disorder

Stephanie Fehr et al.

JOURNAL OF NEURODEVELOPMENTAL DISORDERS (2015)

Article Clinical Neurology

Using a large international sample to investigate epilepsy in Rett syndrome

Xinhua Bao et al.

DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY (2013)

Article Biochemistry & Molecular Biology

The CDKL5 disorder is an independent clinical entity associated with early-onset encephalopathy

Stephanie Fehr et al.

EUROPEAN JOURNAL OF HUMAN GENETICS (2013)

Article Education, Special

InterRett, a model for international data collection in a rare genetic disorder

Sandra Louise et al.

RESEARCH IN AUTISM SPECTRUM DISORDERS (2009)

Article Clinical Neurology

Key clinical features to identify girls with CDKL5 mutations

Nadia Bahi-Buisson et al.

BRAIN (2008)

Article Clinical Neurology

The relationship between quality of life and functioning for children with cerebral palsy

A. Shelly et al.

DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY (2008)

Article Family Studies

Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale

Lesa Hoffman et al.

JOURNAL OF MARRIAGE AND FAMILY (2006)

Article Psychology, Developmental

Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation

AJ Esbensen et al.

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS (2003)

Article Psychology, Developmental

The Rett Syndrome Behaviour Questionnaire (RSBQ): refining the behavioural phenotype of Rett syndrome

RH Mount et al.

JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY (2002)