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A global neuronopathic gaucher disease registry (GARDIAN): a patient-led initiative.
Collin-Histed T, Stoodley M, Beusterien K, Elstein D, Jaffe DH, Revel-Vilk S, Davies EH; International Gaucher Alliance (IGA). Collin-Histed T, et al. Among authors: davies eh. Orphanet J Rare Dis. 2023 Jul 21;18(1):195. doi: 10.1186/s13023-023-02828-w. Orphanet J Rare Dis. 2023. PMID: 37480076 Free PMC article.
The definition of neuronopathic Gaucher disease.
Schiffmann R, Sevigny J, Rolfs A, Davies EH, Goker-Alpan O, Abdelwahab M, Vellodi A, Mengel E, Lukina E, Yoo HW, Collin-Histed T, Narita A, Dinur T, Revel-Vilk S, Arkadir D, Szer J, Wajnrajch M, Ramaswami U, Sidransky E, Donald A, Zimran A. Schiffmann R, et al. Among authors: davies eh. J Inherit Metab Dis. 2020 Sep;43(5):1056-1059. doi: 10.1002/jimd.12235. Epub 2020 Apr 3. J Inherit Metab Dis. 2020. PMID: 32242941 Free PMC article.
Protocol for a mixed-methods study to develop and feasibility test a digital system for the capture of patient-reported outcomes (PROs) in patients receiving chimeric antigen receptor T-cell (CAR-T) therapies (the PRO-CAR-T study).
Hughes SE, McMullan C, Aiyegbusi OL, Shaw K, Kinsella F, Ferguson P, Khatsuria F, Burns D, Pyatt L, Ansell J, Chakera E, Richardson-Abraham J, Denniston AK, Davies EH, Craddock C, Calvert M. Hughes SE, et al. Among authors: davies eh. BMJ Open. 2024 Mar 29;14(3):e085392. doi: 10.1136/bmjopen-2024-085392. BMJ Open. 2024. PMID: 38553074 Free PMC article.
Recommendations to address respondent burden associated with patient-reported outcome assessment.
Aiyegbusi OL, Cruz Rivera S, Roydhouse J, Kamudoni P, Alder Y, Anderson N, Baldwin RM, Bhatnagar V, Black J, Bottomley A, Brundage M, Cella D, Collis P, Davies EH, Denniston AK, Efficace F, Gardner A, Gnanasakthy A, Golub RM, Hughes SE, Jeyes F, Kern S, King-Kallimanis BL, Martin A, McMullan C, Mercieca-Bebber R, Monteiro J, Peipert JD, Quijano-Campos JC, Quinten C, Rantell KR, Regnault A, Sasseville M, Schougaard LMV, Sherafat-Kazemzadeh R, Snyder C, Stover AM, Verdi R, Wilson R, Calvert MJ. Aiyegbusi OL, et al. Among authors: davies eh. Nat Med. 2024 Mar;30(3):650-659. doi: 10.1038/s41591-024-02827-9. Epub 2024 Feb 29. Nat Med. 2024. PMID: 38424214 Review.
A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH).
Saraff V, Boot AM, Linglart A, Semler O, Harvengt P, Williams A, Bailey KMA, Glen F, Davies EH, Wood S, Greentree S, Rylands AJ. Saraff V, et al. Among authors: davies eh. PLoS One. 2024 Jan 19;19(1):e0295080. doi: 10.1371/journal.pone.0295080. eCollection 2024. PLoS One. 2024. PMID: 38241270 Free PMC article.
The Digital 1-Minute Walk Test: A New Patient-centered Cardiorespiratory Endpoint.
Robertson L, Newman J, Clayton S, Ferguson M, Pepke-Zaba J, Cannon J, Sheares K, Taboada D, Bunclark K, Armstrong I, Ferrer Mallol E, Davies EH; National Cohort Study of Idiopathic and Heritable PAH Collaboration, UniPHy Clinical Trials Network; Toshner M. Robertson L, et al. Among authors: davies eh. Am J Respir Crit Care Med. 2024 Mar 15;209(6):753-756. doi: 10.1164/rccm.202310-1855LE. Am J Respir Crit Care Med. 2024. PMID: 38206760 No abstract available.
99 results