Publications

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Displaying 1 through 50 of 2281 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.

Copley-Merriman K, Doward L, Hawe E, Cope S. Clinical trial design, beyond the regulatory. Presentation to be given at the ISPOR 2025; May 15, 2025. Montréal, Canada.

Raza S, Heyes A, Leonard C, D'Souza V, Carney R, Mackie D, Gelinas D, Swijsen A. Analysis of the burden of illness, treatment, and health disparities in amyotrophic lateral sclerosis. Poster to be given at the ISPOR 2025; May 15, 2025. Montréal, Canada.

Buck PM, Masaquel C. The most heavily managed drug categories on Part D formularies. Poster to be given at the ISPOR 2025; May 14, 2025. Montréal, Canada.

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.

Liang Y, Salomonsen R, Colosia A, Nelsen SH, Khan S, Sandelin M. Interventions to improve adherence and persistence to oral medication: a targeted literature review. 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.

Tamhankar MA, Raza S, Brutsaert E, Urdaniz E, Vainilovich Y, Heyes A, Gildea L, Sales-Sanz M. The burden of illness in thyroid eye disease: current state of the evidence. Front Ophthalmol. 2025 Apr 16;5. doi: 10.3389/fopht.2025.1565762

La EM, Sweeney C, Davenport E, Bunniran S. Pharmacy and healthcare provider offices as convenient adult vaccination settings in the US: Patient experiences from a survey of recently-vaccinated adults. Vaccine. 2025 Apr 8;54:127057. doi: 10.1016/j.vaccine.2025.127057

La EM, Sweeney C, Davenport E, Calhoun S, Harmelink A, Singer D. Healthcare professionals' knowledge, attitudes, and practices regarding respiratory syncytial virus disease and vaccination in adults aged 60 years and older. Infect Dis Ther. 2025 Apr;14(4):735-52. doi: 10.1007/s40121-025-01119-0

Craig T, Baptist AP, Anderson J, Zaragoza-Urdaz RH, Burnette AF, Kelbel TE, Riedl MA, Vanegas A, Boyle K, Bartsch JL, Darden C, Brown TM, Schultz BG, Blair C, Sing K, Fox D, Juethner S. Hereditary angioedema: patient health care experiences within underrepresented racial and ethnic groups in the United States. Ann Allergy Asthma Immunol. 2025 Apr;134(4):465-473.e. doi: 10.1016/j.anai.2025.01.007

Horn EK, La EM, Bektas M, Khan S, Gerber SI. Disparities in respiratory syncytial virus risk factors, diagnosis, and outcomes in adults by race, ethnicity, and other social determinants of health in the United States. Expert Rev Pharmacoecon Outcomes Res. 2025 Apr;25(4):459-71. doi: 10.1080/14737167.2024.2441867

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

Khanji C, Nuabor W, Gould T, Kim HK, Barrows S, Herbel B, Njue A. Systematic literature review of outcomes associated with adherence to haemophilia drug therapy. Haemophilia. 2025 Mar;31(2):187-206. doi: 10.1111/hae.15153

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

Gold BD, Goodwin B, Davis K, Sweeney C, Ziemiecki R, Jiang J, Fan T, Boules M, Chen ST, Katzka DA. Satisfaction with and adherence to off-label corticosteroids in adolescents and adults with eosinophilic esophagitis: results of a web-based survey in the United States. J Clin Gastroenterol. 2025 Feb;59(2):138-46. doi: 10.1097/MCG.0000000000002006

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

Wright GC, Zueger PM, Copley-Merriman K, Khan S, Costello J, Krumbach A, Reddy P, Tanjinatus O, Wells AF. Health disparities in rheumatology in the United States. Open Access Rheumatol. 2025 Jan 9;17:1-12. doi: 10.2147/OARRR.S493457

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

D'Souza V, Bhogal P, Njue A. Impact of the innovative licensing and access pathway (ILAP) designation on regulatory and health technology assessment (HTA) outcomes. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S312. doi: 10..1016/j.jval.2024.10.1623

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

Leonard C, Unsworth H, Warttig S, Gildea L, Mordin M, Ling C. HTA considerations for large language models in healthcare. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S137. doi: 10.1016/j.jval.2024.03.730

Leonard C, Bhogal P, Menon AP, Ling C, Mordin M. HTA requirements for medical technologies in Spain. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S494. doi: 10.1016/j.jval.2024.10.2513

Khanji C, Nuabor W, Kim HK, Yubin SA, Kim R, Njue A. Systematic literature review of the economic burden of hemophilia A and B. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S629. doi: 10.1016/j.jval.2024.10.3157

Khanji C, Nuabor W, Kim HK, Yubin SA, Kim R, Njue A. Systematic literature review of the humanistic burden of hemophilia A and B. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S613. doi: 10.1016/j.jval.2024.10.3082

Yubin Sohn A, Khanji C, Nuabor W, Gould T, Kim HK, Barrows SM, Herbel B, Njue A. Effect of adherence to hemophilia drug therapy on outcomes: a systematic literature review. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S634. doi: 10.1016/j.jval.2024.10.3181

Khan S, Copley-Merriman K, Heyes A, Hawe E, Hartley L, Kallmes K. Qualitative and quantitative evidence synthesis strategies to support JCA and IRA submissions. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S382. doi: 10.1016/j.jval.2024.10.1970

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

Ling C, Hawe E, Stevenson A, Low EW. Giving voice to rare diseases during joint clinical assessment (JCA). Presented at the ISPOR Europe 2024; November 20, 2024. Barcelona, Spain.

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.