Publications

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Displaying 1 through 50 of 148 publications.

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).

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

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.

Gnanasakthy A, Romano DeMuro C. Editorial - The limitations of EQ‑5D as a clinical outcome assessment tool. Patient. 2024 May;17(3):215-7. doi: 10.1007/s40271-024-00683-w

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

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

Martin Nguyen A, La Rosa C, Cornell AG, Sher MR, Bernstein JA, Birring SS, DeMuro Romano C, Mayorga M, Milien M, Ervin C. Content validity of the Leicester Cough Questionnaire in adults with refractory or unexplained chronic cough: a qualitative interview study. Ther Adv Respir Dis. 2024 Jan;18:175346662. doi: 10.1177/17534666241274261

Williams V, Romano (DeMuro) C, Clark M, Korver D, Williams N, Goss D, Naujoks C, Marvel J. Psychometric evaluation of an electronic Asthma Symptom Diary for young children. J Patient Rep Outcomes. 2023 Oct 30;7(1):105. doi: 10.1186/s41687-023-00647-y

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

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.

Romano CD, Slota C, Bratlee-Whitaker E, Edwards T, Herring WL, McLeod L, Callahan L, Bullok K, Raimundo K, Taylor J, Taylor G, Kremer I, Monks D, Lappin D, Frangiosa T, Gnanasakthy K, Goss D, Comer M, Paulsen R, Hartry A, DiBenedetti D. Measuring "What Matters Most™" to individuals living with Alzheimer's disease and care partners: a conceptual model of Alzheimer's disease. Poster presented at the AAIC 2023 Conference; July 16, 2023. Amsterdam, Netherlands.

Cella D, Wen PY, Ervin C, Vallow S, Gilloteau I, DeMuro C, Mordin M, Agostinho AC, Dine J. Understanding the patient experience and treatment benefits in patients with non–small-cell lung cancer with brain metastasis. Cancer Med. 2023 Jun 12;12(12):13637-48. doi: 10.1002/cam4.5975

Chan EKH, Williams V, Romano C, Fehnel S, Slagle AF, Stoddard J, Sadoff J, Mayorga M, Lewis S, Yarr S, Ma J, Liu Y, Katz EG, McNulty P, van Dromme I, McQuarrie K. Psychometric evaluation of the symptoms of infection with coronavirus-19 (SIC): results from a cross-sectional study and a phase 3 clinical trial. J Patient Rep Outcomes. 2023 May 17;17(1):45. doi: 10.1186/s41687-023-00581-z

Hauber B, Paulsen R, Krasa HB, Vradenburg G, Comer M, Callahan LF, Winfield J, Potashman M, Hartry A, Lee D, Wilson H, Hoffman DL, Weiberg D, Kremer IN, Taylor GA, Taylor JM, Lappin D, Martin AD, Frangiosa T, Biggar V, Slota C, Romano (DeMuro) C, DiBenedetti D. Assessing what matters to people affected by Alzheimer's disease: a quantitative analysis. Neurol Ther. 2023 Apr;12(2):505-27. doi: 10.1007/s40120-023-00445-0

DiBenedetti D, Menne H, Paulsen R, Krasa HB, Vradenburg G, Comer M, Callahan LF, Winfield J, Potashman M, Heithoff K, Hartry A, Oberdhan D, Wilson H, Hoffman DL, Weinberg D, Kremer IN, Taylor GA, Taylor JM, Lappin D, Martin AD, Hauber B, Romano (DeMuro) C. Technical review of clinical outcomes assessments across the continuum of Alzheimer's disease. Neurol Ther. 2023 Apr;12(2):571-95. doi: 10.1007/s40120-023-00443-2

DeMuro C, Finelli L, Lewis S, Williams V, Martin E, Phillips M, Saretsky T, Osborne R, Norquist J. Assessing the patient experience of respiratory syncytial virus infection: development of a patient-reported outcome measure. Health Qual Life Outcomes. 2023 Feb 28;21(1):20. doi: 10.1186/s12955-022-02066-x

DeMuro (Romano) C, Mayorga M, Ruiz-Guinazu J, Trudel GC, Fehnel S, McQuarrie K, Chan EKH, Katz EG. Development of patient- and observer-reported outcome measures to assess COVID-19 signs and symptoms in children and adolescents. J Patient Rep Outcomes. 2023 Jan 26;7(1):7. doi: 10.1186/s41687-023-00542-6

Romano C, Mayorga M, Ruiz-Guinazu J, Trudel GC, Fehnel S, McQuarrie K, Chan EKH, Katz EG. Evaluation of measures for the assessment of Covid-19 signs and symptoms in children and adolescents. Poster presented at the IDWeek 2022 Conference; October 21, 2022. Washington, DC. [abstract] Open Forum Infect Dis. 2022 Dec 15; 9(Issue Supplement_2):1061. doi: 10.1093/ofid/ofac492.902

Romano (DeMuro) C, Novak G, Choi J, Qin S, Henley D, Donohue M, Romano G, Raman R, Amariglio R, Aisen P, Sperling R. Assessing clinically meaningful functional outcomes in preclinical alzheimer's disease. Poster presented at the 15th Conference Clinical Trials Alzheimer's Disease 2022; November 29, 2022. San Francisco, CA. [abstract] J Prev Alzheimers Dis. 2022 Dec 3; 9(Supplement 1):S186-7.

Williams V, Romano (DeMuro) C, Clark M, Goss D, Naujoks C, Marvel J. Psychometric evaluation of a new electronic pediatric asthma symptom diary. Poster presented at the ISPOR Europe 2022; November 8, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S428. doi: 10.1016/j.jval.2022.09.2130

Bali V, Schelfhout J, Sher M, Peters A, Patel G, Mayorga M, (DeMuro) Romano C. Patient-reported symptoms, impacts, and treatment preferences in refractory or unexplained chronic cough: a qualitative study. Poster presented at the 2022 Advancing Allergy & Immunology Care (ACAAI) Annual Scientific Meeting; November 13, 2022. Louisville, KY.

Marvel J, Goransson O, Clark M, Romano (DeMuro) C, Olayinka-Amao O, Whalley D, Crawford R, Brindicci C, Garg K, Kordy K, Everhard F, Patalano F, Roesler Z, Landles R, Naujoks C, Gutzwiller FS. Interactive tablet application for self-report of asthma symptoms and impacts in young children. Poster presented at the ERS International Congress 2022; September 6, 2022. Barcelona, Spain. [abstract] Eur Respir J. 2022 Sep 4; 60(Suppl 66):2127. doi: 10.1183/13993003.congress-2022.2127

Romano C, Fehnel S, Stoddard J, Sadoff J, Lewis S, McNulty P, Chan EKH, Evans E, Jamieson C, Slagle AF, Mangel A, McQuarrie K. Development of a novel patient‑reported outcome measure to assess signs and symptoms of COVID‑19. J Patient Rep Outcomes. 2022 Jul 29;6(1):85. doi: 10.1186/s41687-022-00471-w

Romano C, Harris N, Gnanasakthy A, D'Alessio D, Chandiwana D. Patient experiences with patient-reported outcome measures in metastatic breast cancer trials: qualitative interviews. J Patient Rep Outcomes. 2022 Jun 3;6(1):60. doi: 10.1186/s41687-022-00460-z

Gnanasakthy A, Norcross L, (DeMuro) Romano C, Carson RT. A review of patient-reported outcome labeling of FDA-approved new drugs (2016-2020): counts, categories, and comprehensibility. Value Health. 2022 Apr;25(4):647-55. doi: 10.1016/j.jval.2021.10.006

Clark M, Romano C, Olayinka-Amao O, Whalley D, Crawford R, Pathak P, Brindicci C, Garg K, Kordy K, Everhard F, Patalano F, Roesler Z, Sutton T, Goransson O, Landles R, Naujoks C, Marvel J, Keininger DL. Development and content validation of a self-completed, electronic Pediatric Asthma Symptom Diary. J Patient Rep Outcomes. 2022 Mar 20;6(1):25. doi: 10.1186/s41687-022-00432-3

Munro CE, Buckley R, Vannini P, DeMuro C, Sperling R, Rentz DM, Johnson K, Gathchel JR, Amariglio R. Longitudinal trajectories of participant- and study partner-rated cognitive decline, in relation to alzheimer's disease biomarkers and mood symptoms. Front Aging Neurosci. 2022 Jan 31;13:806432. doi: 10.3389/fnagi.2021.806432

Williams V, DeMuro C, Finelli L, Qin S, Saretsky TL, Ma J, Lewis S, Phillips M, Osborne RH. Preliminary psychometric evaluation of the respiratory syncytial virus infection intensity impact questionnaire (RSV-IIIQ) in adults. Poster presented at the Virtual ISPOR EUR 2021; November 30, 2021. [abstract] Value Health. 2022 Jan 1; 25(1 Supplement):S234. doi: 10.1016/j.jval.2021.11.1144

DeMuro C. Two years of COVID-19: what has been the global impact on HRQoL and clinical outcomes? Presented at the Virtual ISPOR Europe 2021; November 2021. [abstract] Value Health. 2021 Dec; 24(12):S2.

Lewis S, Wray SE, Evans E, Romano (DeMuro) C, Bartolome L, Su W, Shah R, Russo PA. Patients' experiences in transitioning to secondary progressive multiple sclerosis: qualitative interviews. Neurol Ther. 2021 Dec;10(2):887-904. doi: 10.1007/s40120-021-00265-0

Brandt T, Frangiosa T, Biggar V, Taylor A, Valentine J, Keller B, Price M, DeMuro C, Abler V. Symptoms and treatment needs of people with dementia-related psychosis: a mixed-methods study of the patient experience. Clin Gerontol. 2021 Aug 9;45(3):681-95. doi: 10.1080/07317115.2021.1957050

Gnanasakthy A, Barrett A, Norcross L, D’Alessio D, Romano (DeMuro) C. Use of patient and investigator global impression scales: a review of Food and Drug Administration–approved labeling, 2009 to 2019. Value Health. 2021 Jul;24(7):1016-23. doi: 10.1016/j.jval.2021.01.005

Williams V, Qin S, Romano CD, Lewis S, Williams N, Yarr S, Juul KV, Andersson FL. Psychometric evaluation of the Nocturia Sleep Quality Scale based on data from a prospective observational study. J Clin Sleep Med. 2021 Apr 1;17(4):691-701. doi: 10.5664/jcsm.9010

Amato AA, Hanna MG, Machado PM, Badrising UA, Chinoy H, Benveniste O, Karanam AK, Wu M, Tanko LB, Schubert-Tennigkeit AA, Papanicolaou DA, Lloyd TE, Needham M, Liang C, Reardon KA, de Visser M, Ascherman DP, Barohn RJ, Dimachkie MM, Miller JAL, Kissel JT, Oskarsson B, Joyce NC, Van den Bergh P, Baets J, De Bleecker JL, Karam C, David WS, Mirabella M, Nations SP, Jung HH, Pegoraro E, Maggi L, Rodolico C, Filosto M, Shaibani AI, Sivakumar K, Goyal NA, Mori-Yoshimura M, Yamashita S, Suzuki N, Aoki M, Katsuno M, Morihata H, Murata K, Nodera H, Nishino I, Romano (DeMuro) C, Williams VSL, Vissing J, Auberson LZ, RESILIENT Study Extension Group . Efficacy and safety of Bimagrumab in sporadic inclusion body Myositis: long-term extension of RESILIENT. Neurology. 2021 Mar 23;96(12):e1595-607. doi: 10.1212/WNL.0000000000011626

Starr HL, Abell J, Larish A, Lewis S, DeMuro C, Gogate J, Jamieson C, Daly E, Zaki N, Kramer M. Self-reported review of the value of esketamine in patients with treatment-resistant depression: understanding the patient experience in the STRIVE Study. Psychiatry Research. 2020 Nov;293:113376. doi: 10.1016/j.psychres.2020.113376

Saretsky T, DeMuro C, Finelli L, Phillips M, Lewis S, Martin E, Osborne R, Norquist J. Modification of an existing patient-reported outcome measure (PROM) for a new context of use in a seasonal infectious disease. Poster presented at the 27th Annual Virtual Conference of the International Society for Quality of Life Research (ISQOL); October 19, 2020. [abstract] Qual Life Res. 2020 Oct 17; 29(Suppl 1):S139. doi: 10.1007/s11136-020-02626-y

VanderPluym JH, Ramirez-Campos V, Cortez A, Cohen J, Gandhi S, Lewis S, Sweeney C, DeMuro C, Lipton R. Patient-reported outcomes to assess symptoms and effects across all 5 phases of migraine. Poster presented at the 2020 ISPOR Conference (Conference cancelled); May 2020. [abstract] Value Health. 2020 May; 23(Supplement 1):S280.

Poulos C, Hauber B, Mirzaei F, Dilley A, DeMuro C, Fillit HM. A study of preferences for disease-modifying treatments for Alzheimer's Disease. Poster presented at the 2020 ISPOR Virtual Conference; May 2020. [abstract] Value Health. 2020 May 1; 23(Suppl 1):S278. doi: 10.1016/j.jval.2020.04.991

Saretsky T, Finelli L, Phillips M, DeMuro C, Lewis S, Norquist J, Monto A, Martin ET, Osborne RH. Measuring Respiratory Syncytial Virus (RSV) symptom intensity and impact in adults: content validity assessment of a Patient-Reported Outcome (PRO) measure: the RSV Infection Intensity and Impact Questionnaire (RSV-IIIQ). Poster presented at the 2020 ISPOR Virtual Conference; May 2020. [abstract] Value Health. 2020 May 1; 23(Supplement 1):S360. doi: 10.1016/j.jval.2020.04.1380

Lewis S, Romano C, De Bruecker G, Murrough JW, Shelton R, Singh JB, Jamieson C. Analysis of clinical trial exit interview data in patients with treatment-resistant depression. Patient. 2019 Oct;12(5):527-37. doi: 10.1007/s40271-019-00369-8

Hanna MG, Badrising UA, Benveniste O, Lloyd TE, Needham M, Chinoy H, Aoki M, Machado PM, Liang C, Reardon KA, de Visser M, Ascherman DP, Barohn RJ, Dimachkie MM, Miller JAL, Kissel JT, Joyce NC, Van den Bergh P, Baets J, De Bleecker JL, Karam C, David WS, Mirabella M, Nations SP, Jung HH, Pegoraro E, Maggi L, Rodolico C, Filosto M, Shaibani AL, Sivakumar K, Goyal NA, Mori-Yoshimura M, Yamashita S, Suzuki N, Katsuno M, Murata K, Nodera H, Nishino I, Romano C, Williams VSL, Vissing J, Zhang Auberson L, Wu M, de Vera A, Papanicolaou DA, Amato AA, RESILIENT Study Group. Safety and efficacy of intravenous bimagrumab in inclusion body myositis: a phase 2b, randomised, double-blind, placebo-controlled study (RESILIENT). Lancet Neurol. 2019 Sep;18(9):834-44.

Romano (DeMuro) CD, Lewis S, Barrett A, Andersson FL, Williams V, Ancoli-Israel S, Roth T. Development of the Nocturia Sleep Quality Scale: a patient-reported outcome measure of sleep impact related to nocturia. Sleep Med. 2019 Jul;59:101-6. doi: 10.1016/j.sleep.2019.02.006

Lewis EF, Coles TM, Lewis S, Nelson LM, Barrett A, DeMuro Romano C, Stull DE, Turner SJ, Chang CG. Development, psychometric evaluation, and initial feasibility assessment of a symptom tracker for use by patients with heart failure (HFaST). J Patient Rep Outcomes. 2019 May 2;3(1):26. doi: 10.1186/s41687-019-0113-6

Gnanasakthy A, Barrett A, Evans E, D'Alessio D, Romano (DeMuro) C. A review of patient-reported outcomes labeling for oncology drugs approved by the FDA and the EMA (2012-2016). Value Health. 2019 Feb;22(2):203-9. doi: 10.1016/j.jval.2018.09.2842

Lewis S, DeMuro C, Block SL, Senders S, Wisman P, Toback S, Chien JW, Williams V. Development of a novel observer-reported outcome measure for the assessment of Respiratory Syncytial Virus (RSV) infection symptoms in pediatric clinical trials. J Patient Rep Outcomes. 2018 Dec;2(9). doi: 10.1186/s41687-018-0034-9

DiBenedetti DB, Brown TM, DeMuro CJ, Ervin C, Lewis SA, Fehnel SE. Conducting patient interviews within a clinical trial setting. RTI Press. 2018 Aug. doi: 10.3768/rtipress.2018.op.0054.1808

DeMuro C, Lewis S, Barrett A, Andersson FL. Assessing sleep impact in patients with nocturia disorder. Poster presented at the 2018 ISPOR 23rd Annual International Meeting; May 22, 2018. Baltimore, MD. [abstract] Value Health. 2018 May; 21(Suppl 1):S267. doi: 10.1016/j.jval.2018.04.1816