Amy R. Hunter
London, ENG, United Kingdom
Last Updated: 09/26/2026
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Found 40 publications
Content validity, face validity and comprehensiveness of generic quality-of-life measures in adults and children with rare genetic conditions and their carers: a think aloud qualitative study.
Journal: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
Published: December 12, 2025
The patient-driven Rare Disease Research Network: turning research on its head.
Journal: BMJ open
Published: October 27, 2025
Reach-back to subject matter experts improves healthcare quality, influences the decision to evacuate and reduces costs: an observational study of the UK Defence Medical Services Deployed Telemedicine System.
Journal: BMJ military health
Published: December 16, 2024
Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey.
Journal: European journal of human genetics : EJHG
Published: December 21, 2023
The Effects of Music-Based Interventions for Pain and Anxiety Management during Vaginal Labour and Caesarean Delivery: A Systematic Review and Narrative Synthesis of Randomised Controlled Trials.
Journal: International journal of environmental research and public health
Published: September 21, 2023
Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey.
Journal: Orphanet journal of rare diseases
Published: June 29, 2023
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.
Journal: Orphanet journal of rare diseases
Published: June 28, 2023
Knowledge, attitudes and decision regret: a longitudinal survey study of participants offered genome sequencing in the 100,000 Genomes Project.
Journal: European journal of human genetics : EJHG
Published: April 20, 2023
Preferences for coordinated care for rare diseases: discrete choice experiment.
Journal: Orphanet journal of rare diseases
Published: September 05, 2022
Correction to: Co‑designing models for the communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom.
Journal: Journal of community genetics
Published: June 30, 2022
Co-designing models for the communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom.
Journal: Journal of community genetics
Published: February 14, 2022
Research priorities for mitochondrial disorders: Current landscape and patient and professional views.
Journal: Journal of inherited metabolic disease
Published: January 19, 2022
Last Updated: 09/26/2026