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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.
Malec L, Carcao M, Mathias M, Kragh N, Dumont J, Willemze A, Bystricka L, Wilson A, DiBenedetti D. Experiences with efanesoctocog alfa: exit interviews with caregivers of previously treated patients with hemophilia a from the XTEND-Kids phase 3 clinical trial. Presented at the 65th ASH Annual Meeting & Exposition 2023; December 10, 2023. San Diego, CA.
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.
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.
DiBenedetti D, Huang M-Y, Kosa K, Suthoff E, Bonthapally V, Lasser R, Pollack M, Doherty J, Mak C, Cutler AJ, Mattingly GW. Assessing individuals' experiences with zuranolone for major depressive disorder: qualitative interviews with participants from the open-label shoreline study. Poster presented at the 2023 ASCP Annual Meeting; May 31, 2023. Miami Beach, FL.
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
Srivastava A, Rangarajan S, Ross C, Slota C, DiBenedetti D, Cano V, Andersson S, DasMahapatra P, Bartelt-Hofer J, Afonso M. Fitusiran reaches people's with hemophilia and their caregivers' treatment expectations: qualitative semi-structured interviews of participants of ATLAS-OLE trial (Interim analysis). Poster presented at the 64th ASH Annual Meeting and Exposition; December 11, 2022. New Orleans, LA.
Paller AS, Yosipovitch G, Weidinger S, DiBenedetti D, Whalley D, Gadkari A, Guillemin I, Zhang H, Eckert L, Chao J, Bansal A, Chuang CC, Delevry D. Development, psychometric validation and responder definition of worst itch scale in children with severe atopic dermatitis. Dermatol Ther. 2022 Dec;12(12):2839-50. doi: 10.1007/s13555-022-00804-z
Srivastava A, Rangarajan S, Ross C, Slota C, DiBenedetti D, Cano V, Andersson S, DasMahapatra P, Bartelt-Hofer J, Afonso M. Fitusiran reaches people's with hemophilia and their caregivers' treatment expectations: qualitative semi-structured interviews of participants of ATLAS-OLE Trial (Interim analysis). Poster presented at the American Society of Hematology (ASH) Annual Meeting 2022; December 11, 2022. New Orleans, LA. [abstract] Blood. 2022 Nov 15; 140(Suppl 1):7989-90. doi: 10.1182/blood-2022-166895
Paller A, Siegfried E, Marron SE, Clark M, DiBenedetti D, Nelson L, Chao J, Bansal A, Sun Y, Chuang C, Wang Z. Development and validation of a caregiver-reported numeric rating scale for measuring pruritus in children aged 6 months to <6 years with atopic dermatitis. Poster presented at the 2022 Society for Investigative Dermatology (SID) Annual Meeting; May 2022. Portland, OR. [abstract] J Invest Dermatol. 2022 Aug; 142(8 supplement):S25. doi: 10.1016/j.jid.2022.05.154
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
Hartry A, Menne H, Wronski S, Paulson R, Callahan L, Potashman M, Lee D, Wunderlich G, Hoffman D, Wieberg D, Kremer I, Hauber B, DiBenedetti D. Evaluation of what matters most in existing clinical outcomes assessments in Alzheimer's Disease. Poster presented at the 2020 Alzheimer's Association Virtual International Conference (AAIC); July 29, 2020.
Hauber B, Paulsen R, Callahan L, Potashman M, Lee D, Hartry A, Wunderlich G, Hoffman D, Wieberg D, Kremer I, DiBenedetti D. Quantifying what matters most to patients and care partners in Alzheimer's Disease. Poster presented at the 2020 Alzheimer's Association Virtual International Conference (AAIC); July 29, 2020.
Majid T, Paulsen R, Callahan L, Potashman M, Lee D, Hartry A, Wunderlich G, Hoffman D, Wieberg D, Kremer I, Hauber B, DiBenedetti D. The importance of care partner input in Alzheimer's Disease (AD) drug development. Poster presented at the 2020 Alzheimer's Association Virtual International Conference (AAIC); July 27, 2020.
Hauber B, DiBenedetti D, Vradenburg G, Callahan L, Potashman M, Krasa H, Hartry A, Wunderlich G, Hoffman D, Wieberg D, Kremer I. Identifying what matters to people with and at risk for Alzheimer's disease and their care partners: concept elicitation and item development. Poster presented at the 12th Clinical Trials in Alzheimer’s Disease (CTAD) Meeting; December 6, 2019. San Diego, CA.
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.
