Skip to main content
Publications
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
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
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.
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.
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
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
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.
Matharu M, Pascual J, Nisson Remahl I, Straube A, Lum A, Davar G, Odom D, Bennett L, Proctor C, Gutierrez L, Andrews E, Johannes C. Utilization and safety of onabotulinumtoxinA for the prophylactic treatment of chronic migraine from an observational study in Europe. Cephalalgia. 2017 Dec;37(14):1384-97. doi: 10.1177/0333102417724150
Tell-Marti G, Puig-Butille JA, Potrony M, Plana E, Badenas C, Antonell A, Sanchez-Valle R, Molinuevo JL, Lleo A, Alcolea D, Fortea J, Fernandez-Santiago R, Clarimon J, Llado A, Puig S. A common variant in the MC1R gene (p.V92M) is associated with Alzheimer's disease risk. J Alzheimers Dis. 2017 Feb 3;56(3):1065-74. doi: 10.3233/JAD-161113
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.
Alamo-Junquera D, Sunyer J, Iniguez C, Ballester F, Garcia-Esteban R, Forns J, Turner MC, Lertxundi A, Lertxundi N, Fernandez-Somoano A, Rodriquez-Dehli C, Julvez J. Prenatal head growth and child neuropsychological development at age 14 months. Am J Obstet Gynecol. 2015 May;212(5):661e1-e11. doi: 10.1016/j.ajog.2014.12.001
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.
