Publications
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Law EH, Hanson KA, Harries M, Korver D, Sherif B, Chirila C. Patient-reported outcome improvements following scalp hair regrowth among patients with alopecia areata: analysis of the ALLEGRO-2b/3 trial. J Dermatolog Trea. 2025 Feb 3;36(1):2460577. doi: 10.1080/09546634.2025.2460577
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
Law E, Williams N, Korver D, Bender R, Mitra D, Schaefer G, Nelson LM. Determining meaningful thresholds for evaluating treatment efficacy in patients with alopecia areata. JEACP. 2024 Sep;3(4):1119-31. doi: 10.1002/jvc2.441
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.
Law EH, Sherif B, Mostaghimi A, King B, Sinclair R, Mesinkovshka N, Hanson KA, Korver D, Chirila C. Patients with alopecia areata treated with ritlecitinib have improved patient-reported emotional symptoms and activity limitations due to hair loss: post hoc analyses of ALLEGRO-2b/3. Poster presented at the Maui Derm Hawaii 2024; January 22, 2024. Wailea, HI.
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
Osborne RH, Nelson L, Fehnel S, Williams N, Bender R, Ziemiecki R, Gymnopoulou E, De Paepe E, Vandendijck Y, Norcross L, Heijnen E, Ispas G, Comeaux C, Callendret B, Chan EKH, Scott JA. Evaluation of symptoms in respiratory syncytial virus infection in adults: psychometric evaluation of the respiratory infection intensity and impact questionnaire™ symptom scores. J Patient Rep Outcomes. 2023 Jun 1;7(1):51. doi: 10.1186/s41687-023-00593-9.
Chan EKH, Williams V, Romano C, Fehnel S, Slagle AF, Stoddard J, Sadoff J, Mayorga M, Lewis S, Yarr S, Ma J, Liu Y, Katz EG, McNulty P, van Dromme I, McQuarrie K. Psychometric evaluation of the symptoms of infection with coronavirus-19 (SIC): results from a cross-sectional study and a phase 3 clinical trial. J Patient Rep Outcomes. 2023 May 17;17(1):45. doi: 10.1186/s41687-023-00581-z
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.
Ervin C, Norcross L, Mallya UG, Fehnel S, Mittleman RS, Webster M, Haqq AM, Haws RM. Interview-based patient- and caregiver-reported experiences of hunger and improved quality of life with setmelanotide treatment in bardet-biedl syndrome. Adv Ther. 2023 May;40(5):2394-411. doi: 10.1007/s12325-023-02443-y
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
Cotter SP, Schwartz L, Strong TV, Bender RH, Fehnel S. The Prader-Willi syndrome anxiousness and distress behaviors questionnaire: development and psychometric validation. Value Health. 2023 Feb 1;26(2):243-50. doi: 10.1016/j.jval.2022.08.004
DeMuro (Romano) C, Mayorga M, Ruiz-Guinazu J, Trudel GC, Fehnel S, McQuarrie K, Chan EKH, Katz EG. Development of patient- and observer-reported outcome measures to assess COVID-19 signs and symptoms in children and adolescents. J Patient Rep Outcomes. 2023 Jan 26;7(1):7. doi: 10.1186/s41687-023-00542-6
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, 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
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
Romano C, Fehnel S, Stoddard J, Sadoff J, Lewis S, McNulty P, Chan EKH, Evans E, Jamieson C, Slagle AF, Mangel A, McQuarrie K. Development of a novel patient‑reported outcome measure to assess signs and symptoms of COVID‑19. J Patient Rep Outcomes. 2022 Jul 29;6(1):85. doi: 10.1186/s41687-022-00471-w
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
Wyrwich KW, Winnette R, Bender R, Gandhi K, Williams N, Harris N, Nelson L. Validation of the alopecia areata patient priority outcomes (AAPPO) questionnaire in adults and adolescents with alopecia areata. Dermatol Ther. 2022 Jan;12(1):149-66. doi: 10.1007/s13555-021-00648-z
Osborne R, Nelson L, Fehnel S, Williams N, Bender RH, Ziemiecki R, Gymnopoulou E, De Paepe E, Norcross L, Heijnen E, Ispas G, Cheret A, Comeaux C, Callendret B, Vandendijck Y, Chan E, Scott J. Measurement of symptoms in respiratory syncytial virus–infected adults: meaningful within-patient change thresholds for the respiratory infection intensity and impact questionnaire (RiiQ). Poster presented at the 8th ESWI Influenza Conference Scientific and SPI Virtual Programme; December 4, 2021.
Kolotkin RL, Williams VSL, von Huth Smith L, Meincke HH, Qin S, Williams N, Fehnel SE. Confirmatory psychometric evaluations of the impact of weight on quality of life-lite clinical trials version (IWQOL-Lite-CT). Clin Obes. 2021 Oct;11(5):e12477. doi: 10.1111/cob.12477
Brod M, McLeod L, Markova D, Gianettoni J, Mourya S, Lin Z, Shu A, Smith A. Psychometric validation of the Hypoparathyroidism Patient Experience Scales (HPES). J Patient Rep Outcomes. 2021 Aug 10;5(1):70. doi: 10.1186/s41687-021-00320-2
Osborne RH, Nelson L, Elsworth GR, Fehnel S, Williams N, Bender RH, Ziemiecki R, Gymnopoulou E, De Paepe E, Norcross L, Heijnen E, Ispas G, Cheret A, Comeaux C, Chan E, Scott JA. Psychometric evaluation of the Respiratory Infection Intensity and Impact Questionnaire Version 2 (RiiQTMv2) symptom scores for respiratory syncytial virus. Poster presented at the Virtual ISPOR 2021 Conference; May 2021.
Winnette R, Wyrwich K, Bender R, Gandhi K, Williams N, Harris N, Nelson L. Validation of AAPPO Questionnaire in adults and adolescents with alopecia areata. Poster presented at the Virtual ISPOR 2021 Conference; May 2021.
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
Qin S, Nelson L, McLeod L, Ma J, López Sánchez B, Gamil M, Stevens M, Jane Scott J. Psychometric evaluation of the pediatric RSV severity and outcomes rating system version 7 (PRESORSv7.1, observer-reported and PRESORSv7 clinician- reported forms) scores in young children hospitalized with respiratory syncytial virus infection. Presented at the 2021 Virtual Visual ISOQOL 28th Annual Conference; October 12, 2021. [abstract] Qual Life Res. 2021; 30(Suppl 1):S16-7. doi: https://doi.org/10.1007/s11136-021-02976-1
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
Pariser DM, Simpson EL, Gadkari A, Bieber T, Margolis DJ, Brown M, Nelson L, Mahajan P, Reaney M, Guillemin I, Mallya UG, Eckert L. Evaluating patient-perceived control of atopic dermatitis: design, validation, and scoring of the Atopic Dermatitis Control Tool (ADCT). Curr Med Res Opin. 2020 Mar;36(3):367-76. doi: 10.1080/03007995.2019.1699516
Simpson E, Eckert L, Gadkari A, Mallya UG, Yang M, Nelson L, Brown M, Reaney M, Mahajan P, Guillemin I, Boguniewicz M, Pariser D. Validation of the Atopic Dermatitis Control Tool (ADCT©) using a longitudinal survey of biologic-treated patients with atopic dermatitis. BMC Dermatology. 2019 Nov 6;19(1):15. doi: 10.1186/s12895-019-0095-3
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
Kolotkin RL, Williams VSL, Ervin CM, Williams N, Meincke HH, Qin S, von Huth Smith L, Fehnel SE. Validation of a new measure of quality of life in obesity trials: impact of weight on quality of life-lite clinical trials version. Clin Obes. 2019 Jun;9(3):e12310. doi: 10.1111/cob.12310
DiBenedetti D, McLeod L, Williams N, Coles T, Tzivelekis S, Meckley LM. Development and validation of the IG Patient Experience with Treatment (IGPET), a novel patient-reported measure for individuals with primary immunodeficiency diseases. Poster presented at the 2019 ISPOR 24th Annual International Meeting; May 21, 2019. New Orleans, LA.
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.
Fehnel S, Fiedorek FT, Nelson L, DiBenedetti D, Spence S, Carson RT. Development and psychometric evaluation of the Diabetic Gastroparesis Symptom Severity Diary. Clin Exp Gastroenterol. 2019 Feb 22;12:93-103. doi: 10.2147/CEG.S184016
Meckley L, Coles T, Williams N, DiBenedetti D, McLeod L. Experience with immunoglobulin treatment among patients with PIDD in the US. Poster presented at the American Academy of Allergy, Asthma & Immunology Annual Meeting; February 22, 2019. San Francisco, CA. [abstract] J Allergy Clin Immunol. 2019 Feb; 143(2 Supplement):AB112. doi: 10.1016/j.jaci.2018.12.341
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
Kolotkin RL, Williams V, Ervin CM, Williams N, Meincke HH, Qin S, von Huth Smith L, Fehnel SE. Validation of a new measure of quality of life in obesity trials: IWQOL-Lite Clinical Trials Version. Poster presented at the 2018 Obesity Week Conference; November 13, 2018. Nashville, TN. doi: 10.1111/cob.12310
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.
Coles T, Williams V, Dwyer K, Mordin M. Psychometric evaluation of the patient's knee implant performance questionnaire. Value Health. 2018 Nov;21(11):1305-12. doi: 10.1016/j.jval.2018.05.006