Publications

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Displaying 1 through 50 of 100 publications.

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

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

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

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.

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

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.

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.

Frederiksen KS, Crawford R, Hahn-Pedersen JH, Morrison R, Jeppesen R, Doward L, Weidner W. Insights from social media posts on the lived experience of alzheimer's disease. Poster presented at the ISPOR 2023 Conference; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 supplement):S352. doi: 10.1016/j.jval.2023.03.2395

Clinch S, Whalley D, Ahlers S, Klupp S, Chague J, Holt T, Asadska G, Nelson L, Levy C, Staunton H. Cross-sectional and longitudinal psychometric evaluation of the pediatric quality of life inventory generic core module in autism. Poster presented at the International Society for Autism Research (INSAR) 2023; May 5, 2023. Stockholm, Sweden.

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

Lansdall CJ, McDougall F, Butler LM, Delmar P, Pross N, Qin S, McLeod L, Zhou X, Kerchner GA, Doody RS. Establishing clinically meaningful change on outcome assessments frequently used in trials of mild cognitive impairment due to Alzheimer's disease. J Prev Alzheimers Dis. 2023;10(1):9-18. doi: 10.14283/jpad.2022.102

Gerbasi ME, Goss D, Petrillo J, Nejati M, Lewis S. Patient experiences in essential tremor: mapping functional impacts to existing measures using qualitative research. Poster presented at the 2023 International Congress of Parkinson's Disease and Movement Disorders; August 27, 2023. Copenhagen, Denmark. [abstract] Mov Disord. 2023; 38(Suppl 1).

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

Clinch S, McDougall F, Barrett A, Olayinka-Amao B, Craveiro L, Baker M, Lindemann M. Understanding MS symptoms and impacts through semi-structured interviews with clinical experts and people living with MS. Poster presented at the 2021 CMSC Annual Meeting; October 25, 2021. Orlando, FL.

Clinch S, McDougall F, Barrett A, Olayinka-Amao B, Craveiro L, Baker M, Lindemann M. A patient-focused qualitative study to support content validity of digital performance assessments in MS. Poster presented at the 2021 ECTRIMS Annual Congress; October 13, 2021. [abstract] Mult Scler J Exp Transl Clin. 2021 Oct 21; 27(2 Suppl):329. doi: 10.1177/13524585211044667

Penner I-K, McDougall F, Brown TM, Slota C, Doward L, Julian L, Belachew S, Miller D. Exploring the impact of fatigue in progressive multiple sclerosis: a mixed-methods analysis. Mult Scler Relat Disord. 2020 Aug;43:102207. doi: 10.1016/j.msard.2020.102207

DiBenedetti D, Slota C, Wronski SL, Vradenburg G, Comer M, Callahan LF, Winfield J, Rubino I, Krasa HB, Hartry A, Wieberg D, Kremer IN, Lappin D, Martin AD, Frangiosa T, Biggar V, Hauber B. Assessing what matters most to patients with or at risk for Alzheimer's and care partners: a qualitative study evaluating symptoms, impacts, and outcomes. Alzheimers Res Ther. 2020 Jul 30;12(90). doi: 10.1186/s13195-020-00659-6

Shah S, Sacco P, Jackson L, Price M, Bensink M, Bernstein C. Beyond frequency alone - exploring what meaningful improvement means in the treatment of migraine: focus groups in patients and health care providers. Poster presented at the 2020 American Headache Society 62nd Virtual Annual Scientific Meeting; June 15, 2020. San Diego, CA.

Ervin C, Thach A, Lee A, Navia B, Evans E, Doward L. Refinement of the treatment preference questionnaire in adults with Parkinson's Disease and off-episodes. Poster presented at the ISPOR 2019 European Conference; November 6, 2019. Copenhagen, Denmark. [abstract] Value Health. 2019 Nov; 22(S3):S756. doi: 10.1016/j.jval.2019.09.1870

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

Ervin C, Sutphin J, Thach A, Lee A, Mansfield C, Coulter J. Patient insights into the burden of OFF-episodes in Parkinson's disease: qualitative interviews. Poster presented at the 2019 International Congress of Parkinson’s Disease and Movement Disorders Conference; September 23, 2019. Nice, France.

Vradenburg G, DiBenedetti DB, Hauber B, Slota C, Wronski SL, Comer M, Callahan LF, Winfield J, Rubino I, Krasa HB, Hartry A, Wieberg BA, Kremer IN, Lappin D, Martin AD, Frangiosa T, Biggar V. Findings from the Alzheimer' Disease Patient and Caregiver Engagement (AD PACE) initiative's what matters most qualitative study. Poster presented at the 2019 Alzheimer's Association International Conference (AAIC); July 17, 2019. Los Angeles, CA.

Martin SA, Olayinka-Amao OC, Henke C, Kamudoni P, Gnanasakthy A. Conceptual model and instrument review in multiple sclerosis. Poster presented at the 2017 ISPOR 20th Annual European Congress; November 7, 2017. Glasgow, Scotland.

Clark M, Schwedt TJ, Tepper SJ, Harris N, Martin S, Sapra S, Shah N. Patient satisfaction with prophylactic migraine medications. Poster presented at the 59th Annual Scientific Meeting American Headache Society; June 2017. Boston, MA. [abstract] Headache. 2017 Jun; 57(Suppl S3):133.

Deal LS, DeMuro C, DiBenedetti D, Lewis S. Development of the observable behaviors of autism spectrum disorder scale. Ther Innov Regul Sci. 2017 May 1;51(3):372-9. doi: 10.1177/2168479016680258

Williams V, Coles T, Gnanasakthy A, DeMuro C, Yarr S, Williams NJ, Lowes L, Alfano L, Tseng B. Psychometric validation of a patient-reported measure of physical functioning in sporadic inclusion body myositis. Muscle Nerve. 2016 Oct 13;54(4):658-65. doi: 10.1002/mus.25080

DeMuro C, Lewis S, Lowes L, Alfano L, Tseng B, Gnanasakthy A. Development of the sporadic inclusion body myositis physical functioning assessment (sIFA). Muscle Nerve. 2016 Oct;54(4):653-7. doi: 10.1002/mus.25079

Williams V, Coles T, DeMuro C, Lewis S, Williams N, Yarr S, Barghout V, Lowes L, Alfano L, Goldberg B, Gnanasakthy A, Tseng B. Psychometric evaluation of the Sporadic Inclusion Body Myositis (sIBM) Physical Functioning Assessment (sIFA). Poster presented at the 1st Annual International Conference on Myositis; May 2015. Stockholm, Sweden.

DeMuro C, Lewis S, Lowes L, Tseng B, Gnanasakthy A. A novel measure to assess self-reported physical functioning in patients with sporadic inclusion body myositis. Poster presented at the 2015 ISPOR 20th Annual International Meeting; May 2015. Philadelphia, PA.

Barghout V, DeMuro C, Price M, Lewis S, Tseng B. Skeletal muscle activity and resource tool for sporadic inclusion body myositis: characterization of resource utilization and financial burden experienced by sIBM patients. Poster presented at the 2015 ISPOR 20th Annual International Meeting; May 2015. Philadelphia, PA.

Slota C, Shi A, Chen G, Bevans M, Weng NP. Norepinephrine preferentially modulates memory CD8 T cell function inducing inflammatory cytokine production and reducing proliferation in response to activation. Brain Behav Immun. 2015 May;46:168-79.

Gnanasakthy A, DeMuro C, Lewis S, Tseng B. Development of a disease model for sporadic inclusion body myositis. Poster presented at the 2015 ISPOR 20th Annual International Meeting; May 2015. Philadelphia, PA.

Bhattacharyya S, Sacco P, Shirore R, Sonathi V, Thomas SK. A de novo economic model to assess the cost and quality of life consequences of an intervention for levodopa induced dyskinesia amongst patients with Parkinson's disease. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A590-1.

Rouse M, McKenna S, Twiss J, Graham JE, Wilburn J. Quality of life outcomes in multiple sclerosis: a review of the literature. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A626. doi: 10.1016/j.jval.2013.08.1843

Gnanasakthy A, DeMuro-Mercon CJ, Clark MJ, Mordin MM, Thomas S. Role of patient-reported outcome measures in the assessment of central nervous system agents. Ther Innov Regul Sci. 2013;47(5):613-8.

Cohen JT, Marino RJ, Sacco P, Terrin N. Association between the functional independence measure following spinal cord injury and long-term outcomes. Spinal Cord. 2012 Oct;50(10):728-33. doi: 10.1038/sc.2012.50

Chandran AB, Coon CD, Martin SA, McLeod LD, Coles TM, Arnold LM. Sphygmomanometry-evoked allodynia in chronic pain patients with and without fibromyalgia. Nurs Res. 2012 Sep 1;61(5):363-8.

Lennert B, Bibeau W, Farrelly E, Sacco P, Schoor T. Assessment of treatment patterns and patient outcomes in levodopa-induced dyskinesias (ASTROID): a US chart review study. Am Health Drug Benefits. 2012 Sep;5(6):347-58.

Brown TM, Garg S, Chandran AB, McNett M, Silverman SL, Hadker N. The impact of 'best-practice' patient care in fibromyalgia on practice economics. J Eval Clin Pract. 2012 Aug 1;18(4):793-8.

Chen S, Wu N, Boulanger L, Sacco P. Economic burden of refractory epilepsy with partial onset seizures: an assessment of direct health care resource use and costs. Poster presented at the 2012 ISPOR 17th Annual International Meeting; June 2012. Washington, DC. [abstract] Value Health. 2012 Jun; 15(4):A143.

Coon CD, Fehnel SE, Davis KH, Runken MC, Beach ME, Cady RK. The development of a survey to measure completeness of response to migraine therapy. Headache. 2012 Apr 1;52(4):550-72.

Arnold LM, Williams DA, Hudson JI, Martin SA, Clauw DJ, Crofford LJ, Wang F, Emir B, Lai C, Zablocki R, Mease PJ. Development of responder definitions for fibromyalgia clinical trials. Arthritis Rheum. 2012 Mar 1;64(3):885-94.

Martin SA, Coon CD, McLeod LD, Chandran A, Arnold L. Study of the measurement properties of the Arnold fibromyalgia diagnostic screen: results from a cross-sectional study. Presented at the 75th Annual Scientific Meeting of the American College of Rheumatology and the Association of Rheumatology Health Professionals; November 2011.

Mease PJ, Clauw DJ, Christensen R, Crofford LJ, Gendreau RM, Martin SA. Toward development of a fibromyalgia responder index and disease activity score: oMERACT module update. J Rheumatol. 2011 Jul 1;38(7):1487-95.

Wu N, Chen S, Boulanger L, Fraser K, Sacco P. Incidence, prevalence, and antiepileptic drug treatment patterns of patients with refractory partial onset seizures. Poster presented at the American Epilepsy Society; June 2011. Baltimore, MD.

Fehnel SE, Manjunath R, Ervin CM, French JA, Vanlandingham K, Sweeney CT. Developing a functional status diary for epilepsy. Poster presented at the 64th Annual Meeting of the American Epilepsy Society; December 1, 2010.

McKenna SP, Doward LC, Twiss J, Hagell P, Oprandi NC, Fisk J, Grand'Maison F, Bhan V, Arbizu T, Brassat D, Kohlmann T, Meads DM, Eckert BJ. International development of the Patient-Reported Outcome Indices for Multiple Sclerosis (PRIMUS). Value Health. 2010 Dec 1;13(8):946-51.