“Somewhere to turn to with my questions”: A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic Encephalopathy

Caregiver assessment of quality of life in individuals with genetic developmental and epileptic encephalopathies

(2022) Stacey R. Cohen et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

Question prompt lists and endorsement of question‐asking support patients to get the information they seek—A longitudinal qualitative study

(2022) Marguerite Tracy et al.   HEALTH EXPECTATIONS

‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics

(2022) Christina Q. Nguyen et al.   HEALTH EXPECTATIONS

Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol

(2022) Eden G Robertson et al.   BMJ Open

The severe epilepsy syndromes of infancy: A population‐based study

(2021) Katherine B. Howell et al.   EPILEPSIA

The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear

(2021) Beni Gómez-Zúñiga et al.   International Journal of Environmental Research and Public Health

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

(2021) Johannes Boettcher et al.   International Journal of Environmental Research and Public Health

Psychosocial impact of genetic testing on parents of children with developmental and epileptic encephalopathy

(2021) Suzanne M Nevin et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

Dravet syndrome: Effects on informal caregivers’ mental health and quality of life – A systematic review

(2021) Catarina Gonçalves et al.   EPILEPSY & BEHAVIOR

Impact of developmental and epileptic encephalopathies on caregivers: A literature review

(2021) Katy Gallop et al.   EPILEPSY & BEHAVIOR

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

(2020) Fenella J Gill et al.   PALLIATIVE MEDICINE

Developmental and epileptic encephalopathies: what we do and do not know

(2020) Nicola Specchio et al.   BRAIN

Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions

(2019) Eden G. Robertson et al.   SUPPORTIVE CARE IN CANCER

Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database

(2019) Stéphanie Nguengang Wakap et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Deciphering the concepts behind “Epileptic encephalopathy” and “Developmental and epileptic encephalopathy”

(2019) Ingrid E. Scheffer et al.   EUROPEAN JOURNAL OF PAEDIATRIC NEUROLOGY

The Challenge of Rare Diseases

(2018) James K. Stoller   CHEST

Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey

(2018) Jonathan D. Campbell et al.   EPILEPSY & BEHAVIOR

Participation in psychosocial oncology and quality-of-life research: a systematic review

(2017) Claire E Wakefield et al.   LANCET ONCOLOGY

Distribution of health literacy strengths and weaknesses across socio-demographic groups: a cross-sectional survey using the Health Literacy Questionnaire (HLQ)

(2015) Alison Beauchamp et al.   BMC PUBLIC HEALTH

Rare Disease Terminology and Definitions—A Systematic Global Review: Report of the ISPOR Rare Disease Special Interest Group

(2015) Trevor Richter et al.   VALUE IN HEALTH

The supportive care needs of parents caring for a child with a rare disease: A scoping review

(2015) Lemuel J. Pelentsov et al.   Disability and Health Journal

Good-Parent Beliefs of Parents of Seriously Ill Children

(2015) Chris Feudtner et al.   JAMA Pediatrics

The statistical interpretation of pilot trials: should significance thresholds be reconsidered?

(2014) Ellen C Lee et al.   BMC Medical Research Methodology