Publications

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Displaying 1 through 50 of 212 publications.

Brufsky AM, Sandin R, Stergiopoulos S, Chen C, Karanth S, Li B, Esterberg E, Makari D, Candrilli SD, Goyal RK, Rugo HS. Overall survival with palbociclib and aromatase inhibitor versus aromatase inhibitor alone in older patients with HR+/HER2− metastatic breast cancer. Cancer Med. 2025 Apr;14(7):e70719. doi: 10.1002/cam4.70719

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

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

Passamonti F, Korgaonkar S, Parikh RC, Chevli M, Yucel A, Rombi J, Jones S, Zissler D, Davis KL, Slaff S. Real-world treatment patterns and health outcomes for patients with myelofibrosis treated with fedratinib. Future Oncol. 2025 Feb;21(5):579-91. doi: 10.1080/14796694.2025.2454895

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

Pathak A, Weber MA, Poulos C, Cohen SA, DeBruin V, Kandzari DE. Impact of expected blood pressure reduction on patient preferences for pharmaceutical and renal denervation treatment. J Hypertens. 2025 Feb 1;43(2):228-35. doi: 10.1097/HJH.0000000000003872

Hellwig K, Magyari M, MacDonald TM, Cesta CE, Wergeland S, Leinonen MK, Ornoy A, Vukusic S, Lauer A, Zhou X, Kawai A, Weinrib R, Arana A, Boumenna T. A multi-country cohort database study to assess pregnancy and infant outcomes after potential maternal or paternal exposure to cladribine tablets in the treatment of multiple sclerosis: the CLEAR study methods and status update1. Ther Adv Neurol Disord. 2025 Jan 27;18:175628642. doi: 10.1177/17562864241310996

Chebib FT, Dahl N, Zhou X, Garbinsky D, Wang J, Nunna S, Oberdhan D, Fernandes AW. Tolvaptan and autosomal dominant polycystic kidney disease progression in individuals aged 18–35 years: a pooled database analysis. Kidney Med. 2025 Jan;7(1):100935. doi: 10.1016/j.xkme.2024.100935

Halsby K, Dobler G, Easton A, Karelis G, Krbkova L, Kyncl J, Sellner J, Strle F, Veje M, Zajkowska J, Zavadska D, Angulo FJ, Pilz A, Erber W, Gabriel M, Russo J, Price M, Madhava H, Meyding-Lamade UK. Evaluating the need for standardised disease manifestation categories in patients infected with the tick-borne encephalitis virus: a Delphi panel. Ticks Tick Borne Dis. 2025 Jan;16(1):102431. doi: 10.1016/j.ttbdis.2024.102431

Cappellini MD, Glassberg MB, Meyers J, Jimenez M, Nham T, Bueno L, Sieluk J, Yucel A, Alashkar F. Demographics, clinical characteristics, and real-world treatment patterns among patients with beta-thalassemia: a retrospective medical record abstraction study. Ther Adv Hematol. 2024 Dec 15;15. doi: 0.1177/20406207241298088

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

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

Moss E, Eiden AL, Hartley L, Carrico J, Farkouh R, Poston S, Gabriel M, Golden AH, Bhatti A. Factors impacting vaccine uptake among adult Medicaid beneficiaries: a systematic literature review. Health Aff Sch. 2024 Nov 12;2(11):qxae143. doi: 10.1093/haschl/qxae143

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

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

Neumann ML, Kakani S, Ladner A. Quality of life from childhood to adulthood: perspectives from adult patients with pediatric-onset intestinal failure. J Pediatr Gastroenterol Nutr. 2024 Oct;79(4):863-8. doi: 10.1002/jpn3.12322

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

Oberprieler NG, Pladevall-Vila M, Johannes C, Layton JB, Golozar A, Lavallee M, Liu F, Kubin M, Vizcaya D. FOUNTAIN: a modular research platform for integrated real-world evidence generation. BMC Med Res Methodol. 2024 Oct 1;24(1):224. doi: 10.1186/s12874-024-02344-w

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

Bonner C, Pilar M, Jacobs S, Samsell B, Hollis K. Optimizing drug value and access using implementation science. Poster presented at the ISPOR 2024; May 7, 2024. Atlanta, GA. [abstract] Value Health. 2024 Jun; 27(6 Supplement):S318. doi: 10.1016/j.jval.2024.03.2000

Herring WL, Gallagher ME, Shah N, Morse KC, Mladsi D, Dong OM, Chawla A, Leiding JW, Zhang L, Paramore C, Andemariam B. Cost-effectiveness of lovotibeglogene autotemcel (lovo-cel) gene therapy for patients with sickle cell disease and recurrent vaso-occlusive events in the United States. Pharmacoeconomics. 2024 Jun;42(6):693-714. doi: 10.1007/s40273-024-01385-9

Yee KS, Alexanderian D, Martin S, Olayinka-Amao B, Whiteman DAH. Clinical investigator perspectives on patient outcomes in children with neuronopathic mucopolysaccharidosis II during intrathecal idursulfase-IT treatment. Orphanet J Rare Dis. 2024 Apr 12;19(1):148. doi: 10.1186/s13023-024-03147-4

Barrett A, Olayinka-Amao O, Ziemssen T, Bharadia T, Henke C, Kamudoni P. Understanding the symptoms and impacts experienced by people with relapsing-remitting MS: a qualitative investigation using semi-structured interviews. Neurol Ther. 2024 Apr;13(2):449-64. doi: 10.1007/s40120-024-00584-y

Esterberg E, Iyer S, Nagar SP, Davis KL, Tannir NM. Real-world treatment patterns and clinical outcomes among patients with advanced renal cell carcinoma. Clin Genitourin Cancer. 2024 Apr;22(2):115-125.e. doi: 10.1016/j.clgc.2023.09.009

Bali V, Schelfhout J, Sher MR, Tripathi Peters A, Patel GB, Mayorga M, Goss D, Romano (DeMuro) C. Patient-reported experiences with refractory or unexplained chronic cough: a qualitative analysis. Ther Adv Respir Dis. 2024 Mar 19;18:175346662. doi: 10.1177/17534666241236025

Yee KS, Lewis S, Evans E, Romano (DeMuro) C, Alexanderian D. Caregiver experiences and observations of intrathecal idursulfase-IT treatment in a phase 2/3 trial in pediatric patients with neuronopathic mucopolysaccharidosis II. Orphanet J Rare Dis. 2024 Mar 10;19(1):100. doi: 10.1186/s13023-024-03034-y

Williams V, DeMuro Romano C, Finelli L, Qin S, Saretsky TL, Ma J, Lewis S, Phillips M, Osborne RH, Norquist JM. Psychometric evaluation of the respiratory syncytial virus infection, intensity and impact questionnaire (RSV-iiiQ) in adults. Health Qual Life Outcomes. 2024 Feb 20;22(1):19. doi: 10.1186/s12955-023-02174-2

Mladsi D, Zhou X, Mader G, Sanon M, Wang J, Barnett C, Willey C, Seliger S. Mortality risk in patients with autosomal dominant polycystic kidney disease. BMC Nephrol. 2024 Feb 16;25(1):56. doi: 10.1186/s12882-024-03484-3

Muhlbacher AC, de Bekker-Grob EW, Rivero-Arias O, Levitan B, Vass C. How to present a decision object in health preference research: attributes and levels, the decision model, and the descriptive framework. Patient. 2024 Feb 10. doi: 10.1007/s40271-024-00673-y

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

Neumann ML, Allen JY, Ladner A, Kakani S, Weaver MS, Mercer DF. Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey. Nutr Clin Pract. 2024 Feb;39(1):154-67. doi: 10.1002/ncp.11008

Callahan LF, Samsell B, DiBenedetti D, Frangiosa T, Slota C, Biggar V, Paulsen R, Lappin D, Herring WL, Romano (DeMuro) C. Evaluating elements of the care partner experience in individuals who care for people with Alzheimer's disease across the severity spectrum. Neurol Ther. 2024 Feb;13(1):53-67. doi: 10.1007/s40120-023-00558-6

Gold BD, Goodwin B, Davis K, Sweeney C, Reynolds M, Jiang J, Fan T, Boules M, Chen S, Katzka DA. Health-related quality of life and perceived stigma in eosinophilic esophagitis: a real-world, US, web-based survey. Gastro Hep Adv. 2024;3(8):1087-97. doi: 10.1016/j.gastha.2024.07.015

Diez-Campelo M, Yucel A, Goyal RK, Parikh RC, Esterberg E, Jimenez M, Sluga-O'Callaghan M, Miteva D, Xiao H, Germing U. Treatment characteristics and outcomes in lower-risk, non-del(5q) myelodysplastic syndromes: findings from a medical record review in the USA, Canada and Europe. Future Oncol. 2024;20(27):1993-2004. doi: 10.1080/14796694.2024.2379228

Furqan M, Karanth S, Goyal RK, Cai B, Rombi J, Davis KL, Caro N, Saliba T. Effectiveness of standard treatments in non-small-cell lung cancer with METexon14 skipping mutation: a real-world study. Future Oncol. 2024;20(22):1553-63. doi: 10.2217/fon-2023-1064

Davis S, Edwards T, Norcross L, Fehnel S, Beaudet A, Eckart M, Fastenau J. Use of the National Cancer Institute Patient-Reported Outcomes version of the common terminology criteria for adverse events to assess treatment tolerability in pulmonary arterial hypertension: qualitative patient research findings in current and former users of oral selexipag. J Patient Rep Outcomes. 2023 Dec 18;7(1):134. doi: 10.1186/s41687-023-00673-w.

Golden AH, Gabriel MH, Russo J, Price M, Ruhmel S, Nilsson A, Delong PS, Jelsma J, Carty M. Let's talk about it: an exploration of the comparative use of three different digital platforms to gather patient-reported outcome measures. J Patient Rep Outcomes. 2023 Dec 12;7(1):130. doi: 10.1186/s41687-023-00666-9

Wesselink AK, Hystad P, Kirwa K, Kaufman JD, Willis MD, Wang TR, Szpiro AA, Levy JI, Savitz DA, Rothman KJ, Hatch EE, Wise LA. Air pollution and fecundability in a North American preconception cohort study. Environ Int. 2023 Nov;181:108249. doi: 10.1016/j.envint.2023.108249

Danese D, Goss D, Romano (DeMuro) C, Gupta C. Qualitative assessment of the patient experience of primary hyperoxaluria type 1: an observational study. BMC Nephrol. 2023 Oct 26;24(1):319. doi: 10.1186/s12882-023-03365-1

Njue A, Nuabor W, Lyall M, Margulis A, Mauskopf J, Curcio D, Kurosky S, Gessner BD, Begier E. Systematic literature review of risk factors for poor outcomes among adults with respiratory syncytial virus infection in high-income countries. Open Forum Infect Dis. 2023 Oct 20;10(11):ofad513. doi: 10.1093/ofid/ofad513

Mogle J, Turner JR, Bhargava S, Stawski RS, Almeida DM, Hill NL. Individual differences in frequency and impact of daily memory lapses: results from a national lifespan sample. BMC geriatr. 2023 Oct 17;23(1):670. doi: 10.1186/s12877-023-04363-6

Fishman J, Anderson S, Talbird SE, Dingli D. Analysis of costs per responder in US adults with a paroxysmal nocturnal hemoglobinuria with suboptimal response to prior eculizumab treatment. Hematol Rep. 2023 Oct 13;15(4):578-91. doi: 10.3390/hematolrep15040060

Little CL, Druce KL, Dixon WG, Schultz DM, House T, McBeth J. What do people living with chronic pain want from a pain forecast? A research prioritization study. PLoS One. 2023 Oct 12;18(10):e0292968. doi: 10.1371/journal.pone.0292968

Fermann GJ, Cash BD, Coelho-Prabhu N, Maegele M, Bingisser R, Sehgal V, Cohen AT, Golden AH, Russo J, Price M, Mangel A, Koch B, Christoph MJ, Milling, Jr. TJ. Definition of factor Xa inhibitor–related, life-threatening gastrointestinal bleeding and guidance on when to use reversal therapy: a Delphi panel. J Am Coll Emerg Physicians Open. 2023 Oct 2;4(5):e13043. doi: 10.1002/emp2.13043

Charabaty A, Gibble TH, Moses R, Sweeney C, Wolin D, McSorley D, Wang J, Rodriguez M, Park B, Dubinsky M. Assessing bowel urgency in clinical practice: results from a healthcare professional survey. Poster presented at the AJG 2023 Annual Scientific Meeting; October 24, 2023. Vancouver, Canada. [abstract] Am J Gastroenterol. 2023 Oct; 118(10S):S894-5. doi: 10.14309/01.ajg.0000954312.41350.0a

Hansford HJ, Cashin AG, Jones MD, Swanson SA, Islam N, Douglas SRG, Rizzo RRN, Devonshire JJ, Williams SA, Dahabreh IJ, Dickerman BA, Egger M, Garcia-Albeniz X, Golub RM, Lodi S, Moreno-Betancur M, Pearson SA, Schneeweiss S, Sterne JAC, Sharp MK, Stuart EA, Hernan MA, Lee H, McAuley JH. Reporting of observational studies explicitly aiming to emulate randomized trials: a systematic review. JAMA Netw Open. 2023 Sep 5;6(9):e2336023. doi: 10.1001/jamanetworkopen.2023.36023

Bektas M, Bell T, Khan S, Tumminello B, Fernandez MM, Heyes C, Oton AB. Desmoid tumors: a comprehensive review. Adv Ther. 2023 Sep;40(9):3697-722. doi: 10.1007/s12325-023-02592-0.