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Publications
Martin S, Kosa K, Podgrabinska S, Garg A, Oral EA, Yildirim Simsir I, Brown RJ, Ozen S, Pagovich O, Srinivasan D, Sanchez RJ. Qualitative interviews describing the patient experience of individuals with generalized lipodystrophy enrolled in a clinical trial of mibavademab. Poster presented at the Endocrine Society (ENDO) 2024; June 1, 2024. Boston, MA.
Roth CL, Shoemaker AH, Ervin C, Norcross L, Fehnel S, Huber C, Scimia C, Abuzzahab MJ. Patient- and caregiver-reported experiences of hunger, weight, and energy in acquired yypothalamic obesity before and during setmelanotide treatment. Poster presented at the Endocrine Society (ENDO) 2024; June 1, 2024. Boston, MA.
Kessler AS, Brown TM, Bratlee-Whitaker E, Arca M, Baass A, Baum SJ, Bergeron J, Gaudet D, Grijalvo OM, Alexander VJ, Llonch MV, Fehnel S, Tsimikas S. Patient experience with familial chylomicronemia syndrome before and after olezarsen treatment: qualitative interviews with clinical trial participants. Poster presented at the National Lipid Association Scientific Sessions 2024; May 30, 2024. Las Vegas, NV.
Kimpel CC, Myer EA, Cupples A, Roman Jones J, Seidler KJ, Rick CK, Brown R, Rawlins C, Hadler R, Tsivitse E, Lawlor MAC, Ratcliff A, Holt NR, Callaway-Lane C, Godwin K, Ecker AH. Identifying barriers and facilitators to veterans affairs whole health integration using the updated consolidated framework for implementation research. J Healthc Qual. 2024 May;43(6):137-49. doi: 10.1097/JHQ.0000000000000419
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. Recommendations to address respondent burden associated with patient-reported outcome assessment. Nat Med. 2024 Mar;30(3):650-9. doi: 10.1038/s41591-024-02827-9
Tam S, Neslund-Dudas C, Barrett AM, Barrow LCJ, Fridman I, Kinlaw AC, Puviindran P, Royce TJ, Smith AB, Stein JN, Wood WA, Lafata JE. The perceived usability of virtual visits among black adults' receiving oncology care: a qualitative analysis. Oncologist. 2024 Feb 2;29(2):e237-47. doi: 10.1093/oncolo/oyad260
Malec L, Carcao M, Mathias M, Kragh N, Dumont J, Willemze A, Bystricka L, Wilson A, DiBenedetti D. Experiences with efanesoctocog alfa: exit interviews with caregivers of previously treated patients with hemophilia a from the XTEND-Kids phase 3 clinical trial. Presented at the 65th ASH Annual Meeting & Exposition 2023; December 10, 2023. San Diego, CA.
Phillips T, Lugtenburg P, Kalsekar A, Mutebi A, Wang A, Blaedel J, Kosa K, Martin S, Sacchi M, Kilavuz N, Thieblemont C. Improvements in patient-reported outcomes in relapsed or refractory large b-cell lymphoma patients treated with epcoritamab. Clin Lymphoma Myeloma Leuk. 2023 Nov 27;24(3):e78-e87.e. doi: 10.1016/j.clml.2023.11.005
Clevenger C, Brubaker M, Patel M, Cummings J, Jackson WC, Stroud C, Pechin S, Bratlee-Whitaker E, Brown TM, Fehnel S, Grossberg G. One minute to recognition: the agitation in Alzheimer's screener for caregivers (AASC). Poster presented at the Gerontological Society of America's 2023 Annual Scientific Meeting; November 10, 2023. Tampa, FL.
Romano (DeMuro) C, Bratlee-Whitaker E, Herring WL, Callahan L, Raimundo K, Taylor J, Taylor G, Kremer I, Lappin D, Frangiosa T, Gnanasakthy K, Goss D, Paulsen R, Hartry A, DiBenedetti D. Measuring what matters most to people living with Alzheimer's disease and care partners: what matters most qualitative research. Poster presented at the 16th Clinical Trials on Alzheimer's Disease (CTAD); October 24, 2023. Boston, MA.
Fehlmann B, Thomann A, Davies E, Twiss J, Romano C, Whalley D, Mayorga M, Levy C, Lipsmeier F, Popp W, Kustermann T, Svoboda H, Nikolcheva T, Trundell D, Lindemann M, Taylor K. Patient perspectives on symptoms and functional impacts to inform a digital assessment of Parkinson's disease. Poster presented at the 2023 International Congress of Parkingson's Disease and Movement Disorders; August 27, 2023. Copenhagen, Denmark.