Publications
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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
Whalley D, Balp M, Yarr S, Porter M, Barve A. Patient-reported symptom burden in chronic inducible urticaria: post hoc analysis of baseline data from a phase 3 clinical trial. Poster presented at the 2023 EADV Congress; October 11, 2023. Berlin, Germany.
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
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
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
Crawford R, Allas S, Tremel N, Weiss B, Robo C, Morrison R, Murphy D, Doward L. Development of the Hypoparathyroidism daily diary of symptom experience (HPT-DD-SE) and the Hypoparathyroidism life impact questionnaire (HPT-LIQ). Poster presented at the American Society for Bone and Mineral Research (ASBMR) Annual Meeting 2022; September 9, 2022. Austin, TX.
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
Crawford R, Allas S, Tremel N, Weiss B, Robo C, Morrison R, Murphy D, Doward L. Living with an "invisible disease”: a qualitative study with patients with hypoparathyroidism. Poster presented at the Endocrine Society Annual Meeting (ENDO) 2022; June 11, 2022. Atlanta, GA.
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
Layton JB, Forns J, Turner ME, Dempsey C, Bartsch JL, Anthony MS, Danysh HE, Ritchey ME, Demos G. Falls and fractures in patients with Parkinson's Disease–related psychosis treated with Pimavanserin vs atypical antipsychotics: a cohort study. Drugs Real World Outcomes. 2022 Mar;9(1):9-22. doi: 10.1007/s40801-021-00284-1
Sarda SP, Heyes A, Bektas M, Thankur T, Chao W, Intorcia M, Wronski S, Jones DL. Humanistic and economic burden of geographic atrophy: a systematic literature review. Clin Opththa. 2021 Dec 8;2021(15):4629-44.
Jones DL, Bektas M, Heyes A, Wronski S, Sarda SP. Clinical & humanistic burden of geographic atrophy (GA). Poster presented at the 2021 EURETINA Virtual Congress; September 9, 2021.
Simpson EL, de Bruin-Weller M, Bansal A, Chen Z, Nelson L, Whalley D, Prescilla R, Guillemin I, Delevry D. Definition of clinically meaningful within-patient changes in POEM and CDLQI in children 6 to 11 years of age with severe atopic dermatitis. Dermatol Ther. 2021 Aug;11(4):1415-22. doi: 10.1007/s13555-021-00543-7
Forns J, Layton JB, Bartsch J, Turner ME, Dempsey C, Anthony M, Ritchey ME, Demos G. Increased risk of falls and fractures in patients with psychosis and Parkinson disease. PLoS One. 2021 Jan 27. doi: 10.1371/journal.pone.0246121
McIntyre RS, Patel MD, Masand PS, Harrington A, Gillard P, McElroy SL, Sullivan K, Montano CB, Brown TM, Nelson L, Jain R. The Rapid Mood Screener (RMS): a novel and pragmatic screener for bipolar I disorder. Curr Med Res Opin. 2021 Jan;37(1):135-44. doi: 10.1080/03007995.2020.1860358
Forns J, Layton JB, Bartsch J, Turner ME, Dempsey C, Anthony M, Ritchey ME, Demos G. Increased risk of falls and fractures in patients with psychosis and Parkinson disease. Poster presented at the 2020 36th ICPE International Virtual Conference on Pharmacoepidemiology & Therapeutic Risk Management; September 16, 2020.
Martin SA, Brown TM, Fehnel S, Deal LS, Katz EG, Chiou CF. The atopic dermatitis itch scale: development of a new measure to assess pruritus in patients with atopic dermatitis. J Dermatolog Trea. 2020 Aug;31(5):484-30708. doi: 10.1080/09546634.2020.1713971
Simpson EL, de Bruin-Weller M, Eckert L, Whalley D, Guillemin I, Reaney M, Chen Z, Nelson L, Qin S, Bansal A, Gadkari A. Responder threshold for Patient-Oriented Eczema Measure (POEM) and Children's Dermatology Life Quality Index (CDLQI) in adolescents with atopic dermatitis. Dermatol Ther. 2019 Dec;9(4):799-805. doi: 10.1007/s13555-019-00333-2
Nelson LM, DiBenedetti D, Pariser DM, Glaser DA, Hebert AA, Hofland H, Drew J, Ingolia D, Gillard KK, Fehnel S. Development and validation of the axillary sweating daily diary: a patient-reported outcome measure to assess axillary sweating severity. J Patient Rep Outcomes. 2019 Sep 5;3(1):59. doi: 10.1186/s41687-019-0148-8
Harrington M, Hareendran A, Skalicky A, Wilson H, Clark M, Mikl J. Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire. J Patient Rep Outcomes. 2019 Jul 23;3(1):44. doi: 10.1186/s41687-019-0140-3
DiBenedetti D, Harris N, Rozjabek H, Fastenau J. Evaluating the content validity of the PROMIS® physical function short forms in overweight and obese individuals. Poster presented at the 2019 ISPOR 24th Annual International Meeting; May 20, 2019. New Orleans, LA.
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
DiBenedetti D, Harris N, Rozjabek HM, Fastenau J. Assessing factors influencing eating in overweight and obese individuals. Poster presented at the Endocrine Society’s 101st (ENDO) Annual Meeting and Expo; March 23, 2019. New Orleans, LA.
DiBenedetti D, Tzivelekis S, Meckley L. Humanistic cost impacts associated with immunoglobulin replacement therapy among patients with primary immunodeficiency disease in the United States. Poster presented at the 2019 AMCP Managed Care & Specialty Pharmacy Annual Meeting; March 25, 2019. San Diego, CA. [abstract] J Manag Care Pharm. 2019 Mar; 25(3-a Suppl):S37.
Coles T, Chen K, Nelson L, Harris N, Vera-Llonch M, Krasner A, Martin S. Psychometric evaluation of the hypoparathyroidism symptom diary. Patient Relat Outcome Meas. 2019 Jan 29;2019(10):25-36. doi: 10.2147/PROM.S179310
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
Clark M, Berry P, Martin S, Harris N, Sprecher D, Olitsky S, Hoag JB. Nosebleeds in hereditary hemorrhagic telangiectasia: development of a patient-completed daily eDiary. Laryngoscope Investig Otolaryngol. 2018 Nov 14;3(6):439-45. doi: 10.1002/lio2.211
Fehnel S, Ervin C, McLeod L, Carson RT, Reasner D, Hanlon J, Eremenco S, Coons SJ, PRO Consortium’s Irritable Bowel Syndrome Working Group. Psychometric evaluation of the diary for irritable bowel syndrome symptoms-constipation (DIBSS-C). Poster presented at the 2018 ISPOR 21st Annual European Congress; November 13, 2018. Barcelona, Spain.
DiBenedetti DB, Soliman AM, Ervin C, Evans E, Coddington CC, Agarwal SK, Surrey ES, Taylor HS. Development of the Painful Periods Screening Tool for endometriosis. Postgrad Med. 2018 Nov;130(8):694-702. doi: 10.1080/00325481.2018.1526623
Gable J, Ayer D, Girvan A, Bowman L, Abada P, Ervin C, Evans E, Cella D. Qualitative patient interviews to support the FACT hepatobiliary symptom index-8 among patients with hepatocellular carcinoma and elevated baseline alpha-fetoprotein. Poster presented at the 2018 ISPOR 21st Annual European Congress; November 2018. Barcelona, Spain.
Hanlon J, Ervin C, McLeod L, Butler A, Carson R, Coons S, Fehnel S, Kovacs S. Case study: the Diary of Irritable Bowel Syndrome Symptoms (DIBSS). Presented at the Ninth Annual PRO Consortium Workshop; April 25, 2018. Silver Spring, MD.
Williams V, DeMuro C, Lewis S, Williams N, Wolynn T, Wisman P, Block SL, Senders S, Toback S, Chien JW. Psychometric evaluation of a caregiver diary for the assessment of symptoms of respiratory syncytial virus. J Patient Rep Outcomes. 2018;2(10). doi: 10.1186/s41687-018-0036-7
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.
Davis KH, Su J, Gonzalez JM, Trudeau JT, Nelson LM, Hauber B, Hollis KA. Quantifying the importance of inhaler attributes corresponding to items in the patient satisfaction and preference questionnaire in patients using Combivent Respimat. Health Qual Life Outcomes. 2017 Oct 16;15(1):201. doi: 10.1186/s12955-017-0780-z
Nance R, Vannappagari V, Johannes C, Calingaert B, Saltus C, Boswell S, Rodriguez B, Moore R, Eron J, Geng E, Mathews WC, Saag MS, Kitahata M, Delaney JAC, Crane HM, Centers For AIDS Research Network of Integrated Clinical Systems (CNICS). Viral failure among persons living with HIV initiating dolutegravir-based vs. other recommended regimens in real-world clinical care settings. Poster presented at the IDWeek 2017 Conference; October 2017. San Diego, CA. [abstract] Open Forum Infect Dis. 2017 Oct 4; 4((Suppl 1)):S39. doi: 10.1093/ofid/ofx162.095
Yosipovitch G, Reaney M, Eckert L, Nelson L, Clark M, Ardeleanu M, Radin A, Gadkari A. Validation of the peak pruritus numerical rating scale: results from clinical studies of dupilumab in adult patients with moderate-to-severe atopic dermatitis. Poster presented at the 9th World Congress on Itch; October 2017. Wroclaw, Poland.
Yosipovitch G, Reaney M, Mastey V, Eckert L, Nelson L, Clark M, Abbe A, Ardeleanu M, Radin A, Gadkari A. Validation of the peak pruritus numerical rating scale: results from clinical studies of dupilumab in adults with moderate-to-severe atopic dermatitis. Poster presented at the 2017 American Academy of Dermatology Annual Meeting; March 4, 2017. Orlando, FL. [abstract] J Am Acad Dermatol. 2017 Jun; 76(6 Suppl 1):AB278. doi: 10.1016/j.jaad.2017.04.1082
Zuluaga S, Hess LM, Wolowacz S, Dyachkova Y, Hawe E, Vickers AD, Kaye JA, Bertwistle D. Cost-effectiveness of olaratumab in combination with doxorubicin for the treatment of locally advanced or metastatic soft tissue sarcoma in the United States. Poster presented at the 2017 ISPOR 22nd Annual International Meeting; May 22, 2017. Boston, MA. [abstract] Value Health. 2017 May; 20(5):A108.
Park J, Covert D, Fairchild C, Brubaker M, Martin SA, Lewis S, DeMuro C. Development of an eye drop comfort measure for topical ocular drop application. Poster presented at the 2017 ISPOR 22nd Annual International Meeting; May 24, 2017. Boston, MA. [abstract] Value Health. 2017 May; 20(5):A364.
Yosipovitch G, Reaney M, Eckert L, Nelson L, Clark M, Abbe A, Ardeleanu M, Radin A, Gadkari A. Validation of the peak pruritus numerical rating scale: results from clinical studies of dupilumab in adults with moderate-to-severe atopic dermatitis. Poster presented at the Australasian College of Dermatologists 50th Annual Scientific Meeting; May 2017. Sydney, Australia. [abstract] Australas J Dermatol. 2017 May; 58(S1):106-7. Previously presented at the 2017 American Academy of Dermatology Annual Meeting. doi: 10.1111/ajd.21_12652
Azzabi Zouraq I, Wilson M, Heather G, Curtis R, Luo M, Khalid JM, Minda K. Cost-effectiveness of vedolizumab compared with ustekinumab as treatment for patients with moderately to severely active Crohn´s disease in the United States. Poster presented at the 2017 ISPOR 22nd Annual International Meeting; May 23, 2017. Boston, MA. [abstract] Value Health. 2017 May; 20(5):A183.
Glaser DA, Hebert AA, Fehnel S, DiBenedetti D, Nelson L, Drew J, Pariser DM. Confirmatory psychometric evaluation of the axillary sweating daily diary: a vaildated patient-reported outcome measure to assess axillary hyperhidrosis sweating severity. Poster presented at the 36th Fall Clinical Dermatology Conference; October 2017. Las Vegas, NV. [abstract] Skin: the journal of cutaneous medicine. 2017; 1(Suppl 93):s94. doi: 10.25251/skin.1.supp.93.
Lorenzo M, Hess L, Nicol S, Parikh R, Candrilli SD, Kaye JA. Advanced soft-tissue sarcoma-related treatment patterns and outcomes in elderly patients in the United States. Poster presented at the Connective Tissue Oncology Society Annual Meeting; November 2016. Lisbon, Portugal.
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
Herman BK, Deal LS, DiBenedetti DB, Nelson L, Fehnel SE, Brown TM. Development of the 7-Item Binge Eating Disorder Screener (BEDS-7). Prim Care Companion CNS Disord. 2016 Jun;18(2). doi: 10.4088/PCC.15m01896
Pariser D, Schenkel B, Carter C, Farahi K, Brown TM, Ellis CN. A multicenter, non-interventional study to evaluate patient-reported experiences of living with psoriasis. J Dermatolog Trea. 2016 Jan;27(1):19-26. doi: 10.3109/09546634.2015.1044492