Publications

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Displaying 1 through 50 of 1556 publications.

Korver D. A gentle introduction to creating SAS and R graphs. Presentation to be given at the Southeast SAS Users Group Conference; September 24, 2025. Bethesda, MD.

Sauchelli S, Chicklis EK, Carty MK, Gnanasakthy A. Use of diaries to capture patient-reported outcomes in FDA new drug approvals (2019-2023). Poster to be given at the ISPOR 2025; May 14, 2025. Montréal, Canada.

Gnanasakthy A, Crawford R, Qin S, Doward L, Rockwood NJ. Advanced patient-reported outcomes. Mastering Patient-Reported Outcomes (PRO) in Drug Development. Presentation to be given at the ISPOR 2025; May 13, 2025. Montréal, Canada. Previously presented at the ISPOR Europe 2024.

Rodriguez-Buritica DF, Dine J, Brown TM, Romano (DeMuro) C, Bratlee-Whitaker E, Ferrecchia I, Temkin G, Mora JJ, Babakhani RA, Ko JJ, Weinstein D. Qualitative interviews to support the development of a Patient-Reported Outcome (PRO) measure for glycogen storage disease type Ia. Poster presented at the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting; March 18, 2025. Los Angeles, CA.

Barrett AM, Olayinka-Amao O, Martin S, Doshi D, Bishop KM, Youakim JM. Assessing experiences with trofinetide for rett syndrome: interviews with caregivers of participants in clinical trials. Clin Ther. 2025 Mar;47(3):181-8. doi: 10.1016/j.clinthera.2024.12.012

Hill NL, Bhargava S, Do J, Bratlee-Whitaker EM, Brown MJ, Komalasari R, Wu R, Mogle J. Just as expected? Older adults' aging expectations are associated with subjective cognition. Aging Ment Health. 2025 Mar 1;29(3):444-51. doi: 10.1080/13607863.2024.2399080

Paller AS, Siegfried EC, Marron SE, Clark M, Harris N, Kosa K, Qin S, Whalley D, Chao J, Bansal A, Chuang CC, Wang Z. Skin pain and sleep quality numeric rating scales for children aged 6 months to 5 years with atopic dermatitis. J Eur Acad Dermatol Venereol. 2025 Mar;39(3):e209-12. doi: 10.1111/jdv.20199

Killela MK, Adynski H, Adynski G, Myer EA, Dictus C, Morgan L, Hmiel H, Williams J. Preparing PhD students for tenure-track faculty positions. Nurs Res. 2025 Mar;74(2):E11-4. doi: 10.1097/NNR.0000000000000791

Naik H, Brown M, Meninger S, Lombardelli S. Patient experience with acute hepatic porphyria before and after long-term givosiran treatment in a qualitative interview study. Mol Genet Metab Rep. 2025 Mar;42:101174. doi: 10.1016/j.ymgmr.2024.101174

Frederiksen KS, Hahn-Pedersen J, Crawford R, Morrison R, Jeppesen R, Doward L, Weidner W. Traversing shifting sands-the challenges of caring for someone with Alzheimer's disease and the impact on care partners: social media content analysis. J Med Internet Res. 2025 Feb 18;27:e55468. doi: 10.2196/55468

Law EH, Hanson KA, Harries M, Korver D, Sherif B, Chirila C. Patient-reported outcome improvements following scalp hair regrowth among patients with alopecia areata: analysis of the ALLEGRO-2b/3 trial. J Dermatolog Trea. 2025 Feb 3;36(1):2460577. doi: 10.1080/09546634.2025.2460577

Barrett A, Olayinka-Amao O, Ziemssen T, Bharadia T, Henke C, Kamudoni P. A plain language summary of a study exploring the experiences of people with relapsing-remitting multiple sclerosis: what symptoms and impacts of the disease matter most and how can they be evaluated better? Neurodegener Dis Manag. 2025 Feb;15(1):9-16. doi: 10.1080/17582024.2024.2441068

Blauvelt A, Reckleff J, Zhao Y, Clark M, Kosa K, Harris N, Esfandiari E, Martin S, Whalley D, Emma GY. Content evaluation of pruritus, skin pain, and sleep disturbance patient-reported outcome measures in adolescents and adults with moderate-to-severe atopic dermatitis: qualitative interviews. Br J Dermatol. 2025 Jan 24;192(2):247-60. doi: 10.1093/bjd/ljae346

Dine J, Guan Y, Milien M, Ervin C, Byrne DD, Brown ML, De Anda C, Norquist JM. Evaluation of the content validity of the COVID-19 symptoms daily diary. Patient Relat Outcome Meas. 2025 Jan 17;16:37-53. doi: 10.2147/PROM.S488914

Romano (DeMuro) C, Bratlee-Whhitaker E, Hartry A, Mearns E, Taylor J, Taylor G, Callahan L, Monks D, Kremer I, Lappin D, Frangiosa T, Sangodkar S, Herring WL, Gnanasakthy K, Goss D, McLeod L, Edwards T, Poulos C, DiBenedetti D, Paulsen R. Measuring what matters most to people living with Alzheimer's disease and care partners: What Matters Most quantitative research development. Poster presented at the Alzheimer's Association International Conference (AAIC) 2024; July 31, 2024. Philadelphia, PA. [abstract] Alzheimers Dement. 2025 Jan 9; 20(S4):E085103. doi: 10.1002/alz.085103

Hill NL, Do J, Bratlee-Whitaker E, Turner JR, Sillner A, Fishman C, Mogle J. Views of aging and subjective cognition in middle-aged and older adults: a systematic review. Gerontology. 2025 Jan;71(1):49-70. doi: 10.1159/000542507

DiBenedetti D. Design considerations for in-trial interviews. Presented at the US Food and Drug Administration Patient-Focused Drug Development Virtual Workshop - Methodological and Other Challenges Related to Patient Experience Data; December 13, 2024.

Sutton Norman K, Zigler C, Brown M, Miller J, Bosworth H, Collyar D, Oakes M, Fowler V, Howard-Anderson J, Korn R, Ruffin F, Boucher H, Doemberg S, Reeve B, King H. Patient and clinician perspectives of care interactions for complicated urinary tract infections to inform implementation of patient-reported outcome measures: a qualitative descriptive study. Poster presented at the 17th Annual Conference on the Science of Dissemination and Implementation in Health; December 9, 2024. Arlington, VA.

Kosa K, Vanegas A, Colavecchia C, Coulter J, Christopher SA, Fasano RM, Chou ST, Drachtman RA, Purdie DM, Baker CL, Meier ER. Qualitative interview study to characterize the treatment experiences of participants with sickle cell disease and assess perceptions of red blood cell transfusions. Poster presented at the American Society of Hematology (ASH) Annual Meeting & Exposition; December 8, 2024. San Diego, CA.

Ismail Z, Meehan SR, Farovik A, Miguelez M, Kapadia S, Regnier SA, Zhang Z, Brown TM, Milien M, McIntyre RS. Assessment of patient life engagement in schizophrenia using items from the Positive and Negative Syndrome Scale. Schizophr Res. 2024 Dec;274:337-44. doi: 10.1016/j.schres.2024.10.008

Whalley D, Balp MM, Yarr S, Korver D, Sauchelli Toran S, Kohli R, Orfanos P. Psychometric evaluation of the urticaria activity score in chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S506. doi: 10.1016/j.jval.2024.10.3260

DiBenedetti D, Neme D, Pan-Petesch B, Willemze A, Wynn T, Kragh N, Wilson A. Patient experience with efanesoctocog alfa for severe hemophilia A: results from the XTEND-1 phase 3 clinical study exit interviews. Clin Ther. 2024 Dec;46(12):1016-23. doi: 10.1016/j.clinthera.2024.09.010

Chuang CC, Pariser DM, Simpson E, Dine J, Brown M, Fehnel S, Wang Z. The atopic dermatitis control tool: adaptation and content validation for children and caregivers of children with atopic dermatitis. Dermatol Ther. 2024 Dec;14(12):3261-71. doi: 10.1007/s13555-024-01289-8

Howard K, Adelman D, Ghura S, Acaster S, Clifford S, Kelly CP, Martin SA, Meckley LM, Leffler DA. Development of the celiac disease symptom diary version 2.1© (CDSD 2.1©) patient-reported outcome measure. Qual Life Res. 2024 Dec;33(12):3275-82. doi: 10.1007/s11136-024-03799-6

Sauchelli Toran S, Whalley D, Balp MM, Kohli R, Orfanos P. Content validity of the angioedema activity score from the perspective of adults with chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S516-7. doi: 10.1016/j.jval.2024.10.3307

Sauchelli Toran S, Whalley D, Orfanos P, Kohli R, Balp MM. Clinical relevance of disease activity scores from the patient perspective in chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 20, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S568. doi: 10.1016/j.jval.2024.10.3550

Druce KL, Yimer BB, Humphreys J, Njuki LN, Bourke D, Li M, Ellis B, Zhang Y, Bravo R, Hyrich KL, Verstappen SMM, Dixon WG, McBeth J. The epidemiology of psoriatic arthritis in the UK: a health intelligence analysis of UK primary care electronic health records 1991-2020. Rheumatology. 2024 Dec 1;63(12):3346-52. doi: 10.1093/rheumatology/kead586

Khodabakhsh S, Hoffmann C, Sauchelli S, Shi G, Mitchell A. A novel approach to peer support for academic researchers. Occup Med (Lond). 2024 Nov 28;74(8):601-6. doi: 10.1093/occmed/kqae091

Brubaker M, Bratlee-Whitaker E, Brown TM, Partida A, Bucior I, Patel M, Clevenger C. Linguistic validation of the agitation in Alzheimer's screener for caregivers (AASC™), a novel tool based on the IPA definition of agitation in cognitive disorders. Poster presented at the 2024 International Psychogeriatric Association (IPA) Conference; September 25, 2024. Greenville, SC. [abstract] Int Psychogeriatr. 2024 Nov 27; 36(S1):79. doi: 10.1017/S1041610224001832

Gnanasakthy A, Crawford R, Qin S, Doward L, Rockwood NJ. Advanced patient-reported outcomes. Presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. Previously presented at the ISPOR 2024.

Gelsey FT, Schapiro D, Kosa K, Vass CM, Perez-Nieves M, Pierce A, Poon JL, DiBenedetti D, Mansfield C. Perspectives and preferences of people with type 2 diabetes for the attributes of weekly insulin. Diabetes Ther. 2024 Nov;15(11):2367-79. doi: 10.1007/s13300-024-01652-0

Dine J, Lee J, Shewale A, Stokes J, Basnyat B, Brown M, Greenblatt A, Shirneshan E. Understanding the early Alzheimer's disease experience: perspectives from patients and caregivers. Poster presented at the 17th Clinical Trials on Alzheimer's Disease (CTAD) 2024; October 29, 2024. Madrid, Spain.

Howard-Anderson JR, Brown M, Korn RE, Miller J, Norman Sutton K, Ruffin F, Thomas S, Obi EN, Sidduri N, Watanabe AH, Yucel E, Bosworth H, Boucher H, Collyar D, Doernberg SB, Oakes M, Reeve BB, Fowler VG, King H. Comparing patient and clinician perceptions of health-related quality of life in hospitalized patients with complicated urinary tract infections: a qualitative descriptive study. Poster presented at the IDWeek 2024; October 18, 2024. Los Angeles, CA.

van der Veer SN, Griffiths-Jones D, Parkes M, Druce KL, Amlani-Hatcher P, Armitage CJ, Bansback N, Bower P, Dowding D, Ellis B, Firth J, Gavan S, Mackey E, Sanders C, Sharp CA, Staniland K, Dixon WG, REMORA team. Remote monitoring of rheumatoid arthritis (REMORA): study protocol for a stepped wedge cluster randomized trial and process evaluation of an integrated symptom tracking intervention. Trials. 2024 Oct 15;25(1):683. doi: 10.1186/s13063-024-08497-9

Bratlee-Whitaker E, Hill NL, Mogle J, Bhargava S, DeMuro Romano C. Older adults' dementia worry, self-reported cognition, and control beliefs about cognitive aging: a mixed methods study. Presented at the 31st Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 15, 2024. Cologne, Germany. [abstract] Qual Life Res. 2024 Oct 14; 33(Suppl 1).

Sauchelli S, Levy C, Gnanasakthy A, Doward L, Fitzgerald K. Inclusion of patient-reported outcome endpoints in the summary of product characteristics for non-oncology drugs approved by the European Medicines Agency (2018-2022). Poster presented at the ISOQOL 31st Annual Conference; October 13, 2024. Cologne, Germany.

Percy AK, Neul JL, Benke TA, Berry-Kravis EM, Glaze DG, Marsh ED, Barrett AM, An D, Bishop KM, Youakim JM. Trofinetide for the treatment of Rett syndrome: long-term safety and efficacy results of the 32-month, open-label LILAC-2 study. Med. 2024 Oct 11;5(10):1275-1281. doi: 10.1016/j.medj.2024.06.007

Blauvelt A, Reckleff J, Zhao Y, Clark M, Kosa K, Harris N, Esfandiari E, Martin S, Whalley D, Emma GY. Content evaluation of pruritus, skin pain and sleep disturbance patient-reported outcome measures for adolescents and adults with moderate-to-severe atopic dermatitis: qualitative interviews. Br J Dermatol. 2024 Oct 4. doi: 10.1093/bjd/ljae346

Yap C, Aiyegbusi OL, Alger E, Basch E, Bell J, Bhatnagar V, Cella D, Collis P, Dueck AC, Gilbert A, Gnanasakthy A, Greystoke A, Hansen AR, Kamudoni P, Kholmanskikh O, King-Kallimanis BL, Krumbolz H, Minchom A, O'Connor D, Petrie J, Piccinin C, Rantell KR, Rauz S, Retzer A, Rizk S, Wagner L, Sasseville M, Seymour LK, Weber HA, Wilson R, Calvert M, Peipert JD. Advancing patient-centric care: integrating patient reported outcomes for tolerability assessment in early phase clinical trials – insights from an expert virtual roundtable. EClinicalMedicine. 2024 Oct;76:102838. doi: 10.1016/j.eclinm.2024.102838

Bhushan NL, DeMuro Romano C, Gras-Najjar J, Reno J, Rockwood N, Quattrone W, Adams ET, Kelly B, McLeod L, Bhavnani SP, Bocell FD, Campbell M, Kontson K, Reasner D, Zhang C, Retzky S. Remote-use applications of the amyotrophic lateral sclerosis functional rating scale-revised clinical outcome assessment tool: a scoping review. Value Health. 2024 Oct;27(10):1454-65. doi: 10.1016/j.jval.2024.05.005

Shore S, Ervin C, Kosa K, Fehnel S, Salberg L, Butzner M, Heitner SB, Jacoby D, Saberi S. Qualitative interview study of patient-reported symptoms, impacts and treatment goals of patients with obstructive hypertrophic cardiomyopathy. BMJ Open. 2024 Sep 17;14(9):e081323. doi: 10.1136/bmjopen-2023-081323

Pandya AG, Amoloja T, Bibeau K, DiBenedetti D, Kosa K, Butler K, Kornacki D, Ezzedine K. Assessing participants' experiences with vitiligo from patient interviews. Dermatol Ther. 2024 Sep;14(9):2467-78. doi: 10.1007/s13555-024-01241-w

Law E, Williams N, Korver D, Bender R, Mitra D, Schaefer G, Nelson LM. Determining meaningful thresholds for evaluating treatment efficacy in patients with alopecia areata. JEACP. 2024 Sep;3(4):1119-31. doi: 10.1002/jvc2.441

Clevenger C, Brubaker M, Jackson WC, Stroud J, Peschin S, Fehnel S, Brown TM, Bratlee-Whitaker E, Bucior I, Patel M, Grossberg G. Study protocol: quantitative evaluation of the Agitation in Alzheimer's screener for caregivers (AASC™), a novel tool for improving recognition of agitation in Alzheimer's dementia. Poster presented at the Alzheimer's Association International Conference (AAIC) 2024; July 28, 2024. Philadelphia, PA.

Kessler AS, Brown TM, Bratleey-Whitaker E, Arca M, Baass A, Baum SJ, Bergeron J, Gauget 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 PancreasFest 2024; July 25, 2024. Cincinnati, OH. Previously presented at the National Lipid Association Scientific Sessions 2024.

Norman KS, Brookhart MA, Anakwenze OA, Bolognesi MP, Horn ME, Goode AP, George SZ. Can patient-reported outcomes measurement information system estimate high-impact chronic pain after total shoulder arthroplasty? JSES Int. 2024 Jul 22. doi: 10.1016/j.jseint.2024.07.005

McCann E, Peterson KA, Whalley D, Qin S, Tilton ST, Kamat S, Sun X, Dellon ES. Psychometric evaluation of the Dysphagia Symptom Questionnaire for adults and adolescents with eosinophilic esophagitis. J Allergy Clin Immunol Glob. 2024 Jul 16;3(4):100302. doi: 10.1016/j.jacig.2024.100302

Morga A, Zimmermann L, Valluri U, Siddiqui E, McLeod L, Bender RH. Validation and application of thresholds to define meaningful change in vasomotor symptoms frequency: analysis of pooled SKYLIGHT 1 and 2 data. Adv Ther. 2024 Jul;41(7):2845-58. doi: 10.1007/s12325-024-02849-2

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. [abstract] J Clin Lipidol. 2024 Jul; 18(4 supplement):E568-9. doi: 10.1016/j.jacl.2024.04.105

Norman K, Bettger J, Dong C, French A, Lake A, Tchuisseu YP, Repka S, Vasudeva K, Whitaker R. Perspectives of telehealth and the impact on equity in access to health care from community members and healthcare providers: a multimethod analysis. Poster presented at the Academy Health 2024 Annual Research Meeting; June 30, 2024. Baltimore, MD.