Experiences of caregivers of children with inherited metabolic diseases: a qualitative study
2016 · Orphanet Journal of Rare Diseases · 69 citations
https://doi.org/10.1186/s13023-016-0548-2
K
Kylie Tingley
Oldham Council(GB)
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12
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12
i10-index
Kylie Tingley is an academic researcher from Oldham Council. The author has contributed to research in topics: Metabolism and Genetic Disorders & Genomics and Rare Diseases & Delphi Technique in Research. The author has an h-index of 12, co-authored 36 publications.
ORCID: 0000-0003-4165-7378Papers by this author
worksStakeholder perspectives on clinical research related to therapies for rare diseases: therapeutic misconception and the value of research
2021 · Orphanet Journal of Rare Diseases · 41 citations
https://doi.org/10.1186/s13023-020-01624-0
Using a meta-narrative literature review and focus groups with key stakeholders to identify perceived challenges and solutions for generating robust evidence on the effectiveness of treatments for rare diseases
2018 · Orphanet Journal of Rare Diseases · 31 citations
https://doi.org/10.1186/s13023-018-0851-1
Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease
2015 · BMC Pediatrics · 25 citations
https://doi.org/10.1186/s12887-015-0323-x
Establishing core outcome sets for phenylketonuria (PKU) and medium-chain Acyl-CoA dehydrogenase (MCAD) deficiency in children: study protocol for systematic reviews and Delphi surveys
2017 · Trials · 20 citations
https://doi.org/10.1186/s13063-017-2327-3
Evaluation of the quality of clinical data collection for a pan-Canadian cohort of children affected by inherited metabolic diseases: lessons learned from the Canadian Inherited Metabolic Diseases Research Network
2020 · Orphanet Journal of Rare Diseases · 18 citations
https://doi.org/10.1186/s13023-020-01358-z
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