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Page 1
Consensus clinical management guidelines for Alström syndrome.
Tahani N, Maffei P, Dollfus H, Paisey R, Valverde D, Milan G, Han JC, Favaretto F, Madathil SC, Dawson C, Armstrong MJ, Warfield AT, Düzenli S, Francomano CA, Gunay-Aygun M, Dassie F, Marion V, Valenti M, Leeson-Beevers K, Chivers A, Steeds R, Barrett T, Geberhiwot T. Tahani N, et al. Among authors: leeson beevers k. Orphanet J Rare Dis. 2020 Sep 21;15(1):253. doi: 10.1186/s13023-020-01468-8. Orphanet J Rare Dis. 2020. PMID: 32958032 Free PMC article.
The patient's view on rare disease trial design - a qualitative study.
Gaasterland CMW, van der Weide MCJ, du Prie-Olthof MJ, Donk M, Kaatee MM, Kaczmarek R, Lavery C, Leeson-Beevers K, O'Neill N, Timmis O, van Nederveen V, Vroom E, van der Lee JH. Gaasterland CMW, et al. Among authors: leeson beevers k. Orphanet J Rare Dis. 2019 Feb 7;14(1):31. doi: 10.1186/s13023-019-1002-z. Orphanet J Rare Dis. 2019. PMID: 30732630 Free PMC article.
Development of models of care coordination for rare conditions: a qualitative study.
Walton H, Simpson A, Ramsay AIG, Hunter A, Jones J, Ng PL, Leeson-Beevers K, Bloom L, Kai J, Kokocinska M, Sutcliffe AG, Morris S, Fulop NJ. Walton H, et al. Among authors: leeson beevers k. Orphanet J Rare Dis. 2022 Feb 14;17(1):49. doi: 10.1186/s13023-022-02190-3. Orphanet J Rare Dis. 2022. PMID: 35164822 Free PMC article.
The POWER-tool: Recommendations for involving patient representatives in choosing relevant outcome measures during rare disease clinical trial design.
Gaasterland CMW, Jansen-van der Weide MC, Vroom E, Leeson-Beevers K, Kaatee M, Kaczmarek R, Bartels B, van der Pol WL, Roes KCB, van der Lee JH. Gaasterland CMW, et al. Health Policy. 2018 Dec;122(12):1287-1294. doi: 10.1016/j.healthpol.2018.09.011. Epub 2018 Sep 21. Health Policy. 2018. PMID: 30274934 Free article.
Optimising Exome Prenatal Sequencing Services (EXPRESS): a study protocol to evaluate rapid prenatal exome sequencing in the NHS Genomic Medicine Service.
Hill M, Ellard S, Fisher J, Fulop N, Knight M, Kroese M, Ledger J, Leeson-Beevers K, McEwan A, McMullan D, Mellis R, Morris S, Parker M, Tapon D, Baple E, Blackburn L, Choudry A, Lafarge C, McInnes-Dean H, Peter M, Ramakrishnan R, Roberts L, Searle B, Smith E, Walton H, Wynn SL, Han Wu W, Chitty LS. Hill M, et al. Among authors: leeson beevers k. NIHR Open Res. 2022 Jul 18;2:10. doi: 10.3310/nihropenres.13247.2. eCollection 2022. NIHR Open Res. 2022. PMID: 35935673 Free PMC article.
'Something that helped the whole picture': Experiences of parents offered rapid prenatal exome sequencing in routine clinical care in the English National Health Service.
McInnes-Dean H, Mellis R, Daniel M, Walton H, Baple EL, Bertoli M, Fisher J, Gajewska-Knapik K, Holder-Espinasse M, Lafarge C, Leeson-Beevers K, McEwan A, Pandya P, Parker M, Peet S, Roberts L, Sankaran S, Smith A, Tapon D, Wu WH, Wynn SL, Chitty LS, Hill M, Peter M. McInnes-Dean H, et al. Among authors: leeson beevers k. Prenat Diagn. 2024 Apr;44(4):465-479. doi: 10.1002/pd.6537. Epub 2024 Mar 5. Prenat Diagn. 2024. PMID: 38441167
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.
Walton H, Ng PL, Simpson A, Bloom L, Chitty LS, Fulop NJ, Hunter A, Jones J, Kai J, Kerecuk L, Kokocinska M, Leeson-Beevers K, Parkes S, Ramsay AIG, Sutcliffe A, Taylor C, Morris S. Walton H, et al. Among authors: leeson beevers k. Orphanet J Rare Dis. 2023 Nov 23;18(1):364. doi: 10.1186/s13023-023-02934-9. Orphanet J Rare Dis. 2023. PMID: 37996938 Free PMC article.
Views of children with diabetes from underserved communities, and their families on diabetes, glycaemic control and healthcare provision: A qualitative evidence synthesis.
Moore TH, Dawson S, Wheeler J, Hamilton-Shield J, Barrett TG, Redwood S, Litchfield I, Greenfield SM, Searle A; Diversity in Diabetes (DID) Consortium Members. Moore TH, et al. Diabet Med. 2023 Nov;40(11):e15197. doi: 10.1111/dme.15197. Epub 2023 Aug 27. Diabet Med. 2023. PMID: 37573564 Review.
11 results