Publications

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Displaying 1 through 50 of 223 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

Whalley D, Balp MM, Yarr S, Korver D, Sauchelli Toran S, Kohli R, Orfanos P. Psychometric evaluation of the urticaria activity score in chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 17, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S506. doi: 10.1016/j.jval.2024.10.3260

Sauchelli Toran S, Whalley D, Balp MM, Kohli R, Orfanos P. Content validity of the angioedema activity score from the perspective of adults with chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S516-7. doi: 10.1016/j.jval.2024.10.3307

Sauchelli Toran S, Whalley D, Orfanos P, Kohli R, Balp MM. Clinical relevance of disease activity scores from the patient perspective in chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2024; November 20, 2024. Barcelona, Spain. [abstract] Value Health. 2024 Dec; 27(12 Supplement):S568. doi: 10.1016/j.jval.2024.10.3550

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

Kessler AS, Brown TM, Bratlee-Whitaker E, Arca M, Baass A, Baum SJ, Bergeron J, Gaudet D, Grijalvo OM, Alexander VJ, Llonch MV, Fehnel S, Tsimikas S. Patient experience with familial chylomicronemia syndrome before and after olezarsen treatment: qualitative interviews with clinical trial participants. Poster presented at the National Lipid Association Scientific Sessions 2024; May 30, 2024. Las Vegas, NV. [abstract] J Clin Lipidol. 2024 Jul; 18(4 supplement):E568-9. doi: 10.1016/j.jacl.2024.04.105

Jain M, Girardi A, Ridley M, Rudell K, Gold A. Impact of caring for persons with schizophrenia: review of burden assessment measures. Poster presented at the ISPOR 2024; May 5, 2024. Atlanta, GA. [abstract] Value Health. 2024 Jun; 27(6 Supplement):S34. doi: 10.1016/j.jval.2024.03.181

Girardi A, Ridley M, Suminski N, Gold A, Rudell K. Saturation reporting in COA development and validation studies: a scoping overview. Poster presented at the ISPOR 2024; May 5, 2024. Atlanta, GA. [abstract] Value Health. 2024 Jun; 27(6 Supplement):S54. doi: 10.1016/j.jval.2024.03.2199

Gaudiani L, Sikirica S, Hardin MB, Ervin CM, Goss DS, Kosa KM, Gopinathan S. Patient-reported burden of disease in diabetic peripheral neuropathic pain: learnings from in-depth patient interviews, sub-study of RELIEF-DPN 1. Poster presented at the American Diabetes Association's 84th Scientific Sessions; June 21, 2024. Orlando, FL. [abstract] Diabetes. 2024 Jun; 73(Suppl 1):484.

Potashman MH, Rudell K, Abetz-Webb L, Suminski N, Gold A, Doma R, Jarodia K, Buckley C, Ridley M, Lerner J, Mather J, Millichap J, Berg AT, L'Italien G. Understanding lived experiences with KCNQ2-development and epileptic encephalopathy (KCNQ2-DEE) - parent interviews. Poster presented at the Congress of the European Academy of Neurology (EAN); June 29, 2024. Helsinki, Finland. [abstract] Eur J Neurol. 2024 Jun; 31(Suppl 1):363.

Comerford E, Norcross L, Sasane M, Zheng Y, Gnanasakthy A. Patient-reported outcome (PRO) data in oncology NDAs approved by the FDA (2018–2021): a review of criticism and concerns in comments from regulators. Poster presented at the National Comprehensive Cancer Network (NCCN) 2024 Annual Conference; April 5, 2024. Orlando, FL. [abstract] J Natl Compr Canc Netw. 2024 Apr 5; 22(2.5). doi: 10.6004/jnccn.2023.7146

Merola JF, Werth V, Choi JC, Becker B, Edwards T, Hobar C, Pomponi S, Strand V. Qualitative patient interview study in patients with systemic lupus erythematosus to assess patient perception of fatigue and skin-related symptoms. Poster presented at the American College of Rheumatology (ACR) Convergence 2024; November 17, 2024. Washington, DC. [abstract] Arthritis Rheumatol. 2024; 76(suppl 9).

Gibble TH, Kosa K, Basnyat B, Martin S, Moses R, Dubinsky M. Patient perspectives on symptoms and impacts in Crohn's disease: results from qualitative research. Poster presented at the European Crohn's and Colitis Organisation (ECCO) 2024; February 21, 2024. Stockholm, Sweden. [abstract] J Crohns Colitis. 2024 Jan; 18(Suppl 1):i265.

Gibble TH, Kosa K, Basnyat B, Martin S, Moses R, Dubinsky M. Cognitive debriefing of a patient-reported outcome measure for abdominal pain and loose stool frequency in Crohn's disease. Poster presented at the European Crohn's and Colitis Organisation (ECCO) 2024; February 21, 2024. Stockholm, Sweden. [abstract] J Crohns Colitis. 2024 Jan; 18(Suppl 1):i572.

Arends S, Choi JC, Becker B, Edwards T, Sreih A, Christodoulou A, Strand V. Qualitative study on patient-reported outcome measures in patients with Sjogren's disease. Poster presented at the American College of Rheumatology (ACR) Convergence 2024; November 17, 2024. Washington, DC. [abstract] Arthritis Rheumatol. 2024; 76(suppl 9).

Doma R, Suminski N, Gold A. Landscape analysis of Alzheimer's disease-specific caregiver outcome assessments. Poster presented at the ISPOR Europe 2023; November 12, 2023. Copenhagen, Denmark. [abstract] Value Health. 2023 Dec; 26(12 Supplement):S227. doi: 10.1016/j.jval.2023.09.1173

Gold A, Brouwer E, Hakkarainen KM, Brown D. A review of patient-reported outcomes and external control arms in regulatory submissions of novel oncology drugs. Poster presented at the ISPOR Europe 2023; November 12, 2023. Copenhagen, Denmark. [abstract] Value Health. 2023 Dec; 26(12 Supplement):S216-7. doi: 10.1016/j.jval.2023.09.1120

Gold A, Suminksi N, Abbetz-Web L, Rudell K. Patient-focused evaluation of infant and toddler developmental clinical outcomes assessments (COAs) in clinical trials. Poster presented at the 30th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 18, 2023. [abstract] Qual Life Res. 2023 Nov 4; 32(Suppl 2):S110-1. doi: 10.1007/s11136-023-03530-x

Kamudoni P, Olayinka-Amao B, Barrett A, Park J. Appropriateness of Skindex 29 1 3 in cutaneous lupus erythematosus. Poster presented at the 30th Annual Conference of the International Society for Quality of Life Research; October 18, 2023. Alberta, Canada. [abstract] Qual Life Res. 2023 Nov 4; 32(Supple 2):S203. doi: 10.1007/s11136-023-03530-x

Kamudoni P, Olayinka-Amao O, Barrett A, Park J. Identifying meaningful aspects of worst itch in cutaneous lupus erythematosus for assessment using an itch numeric rating scale. Poster presented at the 30th Annual Conference of the International Society for Quality of Life Research; October 18, 2023. Alberta, Canada. [abstract] Qual Life Res. 2023 Nov 4; 32(Suppl2):S204. doi: 10.1007/s11136-023-03530-x

Edwards T, Norcross L, Fine J, Martin S, Coulouvrat C, Spears P, Herold CI, Ferrari G, Onwudiwe N. Side effects and impacts of extended adjuvant endocrine therapy: a qualitative study among women with HR+/HER2- breast cancer. Poster presented at the 2023 ASCO Annual Meeting; June 2, 2023. Chicago, IL. [abstract] J Clin Oncol. 2023 Jun; 41(Suppl 16):e12509. doi: 10.1200/JCO.2023.41.16_suppl.e12509

Grant S, Gold A, Pavisic I, Doma R, Rudell K. Using qualitative methods to develop grounded relevant content for preference surveys in a Specific Rare Bleeding Disorder (SRBD). Poster presented at the ISPOR 2023; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 Supplement):S327. doi: 10.1016/j.jval.2023.03.1864

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

Doma R, Gold A, Gregg M, Brouwer ES, Rudell K. A secondary analysis of the cross-cultural validation of multi-dimensional postpartum health PROMs, and suggestions for improving their validity and administration. Poster presented at the ISPOR 2023; May 7, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 Supplement):S189. doi: 10.1016/j.jval.2023.03.1021

Kosa K, Mutebi A, Wang A, Blaedel J, Sacchi M, Martin S. Improvements in symptoms, impact of treatment, and satisfaction with treatment among patients with relapsed or refractory b-cell non-hodgkin lymphoma treated with subcutaneous epcoritamab. Poster presented at the ISPOR 2023 Conference; May 8, 2023. Boston, MA. [abstract] Value Health. 2023 Jun; 26(6 supplement):S315. doi: 10.1016/j.jval.2023.03.1800

Maeda-Chubachi T, McLeod L, Cartwright M. Meaningful change in children's dermatology life quality index (DLQI) and lesion counts in patients with molluscum contagiosum. Poster presented at the First International Societies for Investigative Dermatology (ISID2023) Meeting; May 10, 2023. Tokyo, Japan. [abstract] J Invest Dermatol. 2023 May; 143(5 Suppl):S105. doi: 10.1016/j.jid.2023.03.622

Wilson A, Kragh N, DiBenedetti D, Pan-Petesch B, Wynn T, Neme D, Willemze A. Patient experience with efanesoctocog alfa: results from the XTEND-1 phase 3 clinical trial exit interviews in patients with severe haemophilia A. Poster presented at the 16th Annual Congress of European Association for Haemophilia and Allied Disorders 2023; February 7, 2023. Manchester, England. [abstract] Haematologica. 2023 Feb 5; 29(S1):137-8. doi: 10.1111/hae.14715

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).

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

Morrison R, Allas S, Crawford R, Tremel N, Weiss B, Robo C, Doward L. International adaptation and linguistic validation of the hypoparathyroidism daily diary of symptom experience (HPT-DD-SE) and the hypoparathyroidism life impact questionnaire (HPT-LIQ). Poster presented at the ISPOR Europe 2022; November 8, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S418. doi: 10.1016/j.jval.2022.09.2079

Whalley D, Morrison R, Balp MM, Joubert Y, McKenna SJ, Christen L, Naujoks C, Gardner DD, Dery E, Lacombe A. Adaptation of the urticaria patient daily diary for caregiver completion in pediatric chronic spontaneous urticaria. Poster presented at the ISPOR Europe 2022; November 8, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S418. doi: 10.1016/j.jval.2022.09.2077

Crawford R, Thompson A, Chang J, Morrison R, Doward L. Patient and caregiver insight into the impact of non-muscle-invasive bladder cancer and its treatments: a social media review. Poster presented at the ISPOR Europe 2022; November 7, 2022. Vienna, Austria. [abstract] Value Health. 2022 Dec 1; 25(12):S409. doi: 10.1016/j.jval.2022.09.2032

Trennery CL, Martin S, Kosa K, Demetriou L, Joshi AV. Patient perceptions of treatment success in uncomplicated urinary tract infection. Poster presented at the IDWeek 2022; October 22, 2022. Washington, DC. [abstract] Open Forum Infect Dis. 2022 Dec; 9(Suppl 2):S917-8. doi: 10.1093/ofid/ofac492.1861

Trennery C, Kosa K, Joshi A, Demetriou L, Martin S. Applying established methods to evaluate the meaningfulness of PRO endpoints to endpoints defined by Clinician-reported Outcomes (ClinROs): an example of uncomplicated Urinary Tract Infection (uUTI). Poster presented at the ISOQOL 29th Annual Conference 2022; October 19, 2022. Prague, Czech Republic. [abstract] Qual Life Res. 2022 Nov 25; 31((Suppl 2)):S132. doi: 10.1007/s11136-022-03257-1

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

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

Paller A, Siegried E, Marron SE, Clark M, Kosa K, Whalley D, Chao J, Bansal A, Sun Y, Chuang C, Wang Z. Development and validation of a caregiver-reported numeric rating scale for measuring sleep quality in children aged 6 months to <6 years with atopic dermatitis. Poster presented at the 2022 Society for Investigative Dermatology (SID) Annual Meeting; May 19, 2022. Portland, OR. [abstract] J Invest Dermatol. 2022 Aug; 142(8 supplement):S42. doi: 10.1016/j.jid.2022.05.256

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

Paller A, Siegfried E, Marron SE, Clark M, Harris N, Quin S, Chao J, Bansal A, Sun Y, Chuang C, Wang Z. Development and validation of a caregiver reported numeric rating scale for measuring skin pain in children aged 6 months to 5 years with atopic dermatitis. Poster presented at the 2022 Society for Investigative Dermatology (SID) Annual Meeting; May 19, 2022. Portland, OR. [abstract] J Invest Dermatol. 2022 Aug 1; 142(8 supplement):S42. doi: 10.1016/j.jid.2022.05.257

Haggerty A, Barrett A, Dine J, Martin L, Shah P, Buckingham T. Shared decision making in frontline maintenance therapy for ovarian cancer: a qualitative assessment. Poster presented at the 2022 Society of Gynecologic Oncology Annual Meeting; March 18, 2022. Phoenix, AZ. [abstract] Gynecol Oncol. 2022 Aug; 166(Supplement 1):S286. doi: 10.1016/S0090-8258(22)01810-8

Whalley D, Belongie K, Frangiosa T, Krasa H, Mladsi DM, Twiss J, Wolowacz S. Understanding the patient experience of erythropoietic protoporphyria and x-linked protoporphyria: a qualitative study. Poster presented at the ISPOR 2022 Conference; May 15, 2022. Washington, DC. [abstract] Value Health. 2022 Jun; 25(6 S1).

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

Martin SA, Meckley LM, Harris NI, Chen KS, Leffler DA. Symptom assessment in adolescents and adults with celiac disease. Poster presented at the Virtual ISPOR Europe 2021; December 1, 2021. [abstract] Value Health. 2021 Dec; 24(12):S2.

Joly F, DasMahapatra P, Su J, DiBenedetti D, Kosa K, Hill Q. Development of a cold Agglutinin disease-specific patient-reported outcome symptom measure. Poster presented at the 2021 63rd American Society of Hematology (ASH) Annual Meeting & Exposition; December 13, 2021. [abstract] Blood. 2021 Nov 23; 138(supplement 1):4057. doi: 10.1182/blood-2021-147199

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

Doward L, Twiss J, Breckons M, Balp MM, Pettersson B, McSweeney L, Oluboyede Y, Vale L, Brass C, Anstee QM, Sanyal AJ. Evaluation of the NASH-CHECK patient-reported outcome instrument for patients with nonalcoholic steatohepatitis (NASH) with compensated cirrhosis. Poster presented at the AASLD Liver Meeting; November 12, 2021. Anaheim, CA. [abstract] Hepatology. 2021 Oct 1; 74(S1):1007A. doi: 10.1002/hep.32188

Levy C, Bell T, Lyall M, Mamolo C, Neuhof A, Crawford R, Heyes A. The patient experience of multiple myeloma: symptoms and health-related quality of life. Poster presented at the EHA2021 Virtual Congress; June 9, 2021. [abstract] Hemasphere. 2021; 5(S2):789.

Crawford R, Bell T, Levy C, Mamolo C, Lyall M, Neuhof A, Heyes A. The impact of COVID-19 on patient disease experience: insights from social media posts contributed by patients with multiple myeloma. Poster presented at the EHA2021 Virtual Congress; June 9, 2021. [abstract] Hemasphere. 2021; 5(S2).