Publications

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Displaying 1 through 44 of 44 publications.

Tabberer M, Williamson N, Tatlock S, Gater A, Grimes R, Akinseye C, Neil D, Mahon-Smith A, Nelsen L. Qualitative interviews of patients with COPD and muscle weakness enrolled in a clinical trial evaluating a new anabolic treatment: patient perspectives of disease experience, trial participation and outcome assessments. J Patient Rep Outcomes. 2024 Apr 20;8(1):45. doi: 10.1186/s41687-024-00712-0

Davis S, Edwards T, Norcross L, Fehnel S, Beaudet A, Eckart M, Fastenau J. Use of the National Cancer Institute Patient-Reported Outcomes version of the common terminology criteria for adverse events to assess treatment tolerability in pulmonary arterial hypertension: qualitative patient research findings in current and former users of oral selexipag. J Patient Rep Outcomes. 2023 Dec 18;7(1):134. doi: 10.1186/s41687-023-00673-w.

Golden AH, Gabriel MH, Russo J, Price M, Ruhmel S, Nilsson A, Delong PS, Jelsma J, Carty M. Let's talk about it: an exploration of the comparative use of three different digital platforms to gather patient-reported outcome measures. J Patient Rep Outcomes. 2023 Dec 12;7(1):130. doi: 10.1186/s41687-023-00666-9

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

Martin S, Harris N, Romanus D. Evaluating meaningful changes in physical functioning and cognitive declines in metachromatic leukodystrophy: a caregiver interview study. J Patient Rep Outcomes. 2023 Jul 17;7(1):70. doi: 10.1186/s41687-023-00595-7

Twiss J, Whalley D, Doward L, Balp MM, Brass CA, Cryer D, Sanyal A, Anstee QM. Validation of NASH-CHECK: a novel patient-reported outcome measure for nonalcoholic steatohepatitis. J Patient Rep Outcomes. 2023 Jul 14;7(1):69. doi: 10.1186/s41687-023-00589-5

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

Martin S, Bender R, Krasner A, Marmon T, Monahan M, Nelson L. Development and evaluation of the acromegaly symptom diary. J Patient Rep Outcomes. 2023 Feb 15;7(1):15. doi: 10.1186/s41687-023-00541-7

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

Therrien F, Meehan SR, Weiss C, Dine J, Brown TM, MacKenzie EM. Exploring life engagement from the perspective of patients with major depressive disorder: a study using patient interviews. J Patient Rep Outcomes. 2022 Oct 12;6(1):111. doi: 10.1186/s41687-022-00517-z

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

Martin S, Shanchez RJ, Olayinka-Amao B, Harris C, Fehnel S. Qualitative interviews in patients with lipodystrophy to assess the patient experience: evaluation of hunger and other symptoms. J Patient Rep Outcomes. 2022 Jul 29.

Li Y, Misumi I, Shiota T, Sun L, Lenarcic EM, Kim H, Shirasaki T, Hertel-Wulff A, Tibbs T, Mitchell JE, McKnight KL, Cameron CE, Moorman NJ, McGivern DR, Cullen JM, Whitmire JK, Lemon SM. The ZCCHC14/TENT4 complex is required for hepatitis A virus RNA synthesis. Proc Natl Acad Sci U S A. 2022 Jul 12;119(28):e22045111. doi: 10.1073/pnas.2204511119.

Romano C, Harris N, Gnanasakthy A, D'Alessio D, Chandiwana D. Patient experiences with patient-reported outcome measures in metastatic breast cancer trials: qualitative interviews. J Patient Rep Outcomes. 2022 Jun 3;6(1):60. doi: 10.1186/s41687-022-00460-z

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

Weiss C, Meehan SR, Brown TM, Gupta C, Morup MF, Thase ME, McIntyre RS, Ismail Z. Effects of adjunctive brexpiprazole on calmness and life engagement in major depressive disorder: post hoc analysis of patient-reported outcomes from clinical trial exit interviews. J Patient Rep Outcomes. 2021 Dec 11;5(1):128. doi: 10.1186/s41687-021-00380-4.

Darden C, Price M, Ray D, Goldstein G, Goss D, Bennett L, Garbinsky D, Thota R. Patients' satisfaction with long-acting injectable somatostatin analog therapy for neuroendocrine tumors. J Patient Rep Outcomes. 2021 Sep 7;5(1):82. doi: 10.1186/s41687-021-00355-5

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

English M, Stoykova B, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study: burden of menopause-associated vasomotor symptoms (VMS) and validation of PROMIS sleep disturbance and sleep-related impairment measures for assessment of VMS impact on sleep. J Patient Rep Outcomes. 2021 Apr 26;5(1):37. doi: 10.1186/s41687-021-00289-y

Fastenau J, Rozjabek H, Qin S, McLeod L, Nelson L, Ma J, Harris N. Psychometric evaluation of the DAILY EATS questionnaire in individuals living with obesity. J Patient Rep Outcomes. 2020 Nov 23;4(1):99. doi: 10.1186/s41687-020-00259-w

Mansfield CA, Metcalfe KA, Snyder C, Lindeman GJ, Posner J, Friedman S, Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer, Lynch HT, Narod SA, Evans DG, Liede A. Preferences for breast cancer prevention among women with a BRCA1 or BRCA2 mutation. Hered Cancer Clin Pract. 2020 Sep 29;18(20). doi: 10.1186/s13053-020-00152-z

Metcalfe KA, Price MA, Mansfield C, Hallett DC, Lindeman GJ, Fairchild A, Posner J, Friedman S, Snyder C, Kathleen Cunningham Foundation Consortium for Research into Familial Breast Cancer, Lynch HT, Evans DG, Narod SA, Liede A. Predictors of long-term cancer-related distress among female BRCA1 and BRCA2 mutation carriers without a cancer diagnosis: an international analysis. Br J Cancer. 2020 Jul 21;123:268-74. doi: 10.1038/s41416-020-0861-3

DiBenedetti D, Soliman AM, Gupta C, Surrey ES. Patients' perspectives of endometriosis-related fatigue: qualitative interviews. J Patient Rep Outcomes. 2020 May 6;4(1):33. doi: 10.1186/s41687-020-00200-1

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

Stover AM, McLeod L, Langer MM, Chen WH, Reeve BB. State of the psychometric methods: patient-reported outcome measure development and refinement using item response theory. J Patient Rep Outcomes. 2019 Jul 30;3(1):50. doi: 10.1186/s41687-019-0130-5.

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

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

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

Takeuchi H, Schneider M, Williamson DB, Ito A, Takeuchi M, Handford PA, Haltiwanger RS. Two novel protein O-glucosyltransferases that modify sites distinct from POGLUT1 and affect Notch trafficking and signaling. Proc Natl Acad Sci U S A. 2018 Sep 4;115(36):E8395-402. doi: 10.1073/pnas.1804005115.

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

DiTrapani J, Rockwood N, Jeon M. Explanatory IRT analysis using the SPIRT macro in SPSS. TQMP. 2018;14(2):81-98. doi: 10.20982/tqmp.14.2.p081

Codony-Servat J, Cuatrecasas M, Asensio E, Montironi C, Martinez-Cardus A, Marin-Aguilera M, Horndler C, Martinez-Balibrea E, Rubini M, Jares P, Reig O, Victoria I, Gaba L, Martin-Richard M, Alonso V, Escudero P, Fernandez-Martos C, Feliu J, Mendez JC, Mendez M, Gallego J, Salud A, Rojo F, Castells A, Prat A, Rosell R, Garcia-Albeniz X, Camps J, Maurel J. Nuclear IGF-1R predicts chemotherapy and targeted therapy resistance in metastatic colorectal cancer. Br J Cancer. 2017 Dec 5;117(12):1777-86. doi: 10.1038/bjc.2017.279.

Brown TM, Martin S, Fehnel SE, Deal LS. Development of the impact of juvenile metachromatic leukodystrophy on physical activities scale. J Patient Rep Outcomes. 2017;2(1):15. doi: 10.1186/s41687-018-0041-x

Garcia-Albeniz X, Rudolph A, Hutter C, White E, Lin Y, Rosse SA, Figueiredo JC, Harrison TA, Jiao S, Brenner H, Casey G, Hudson TJ, Thornquist M, Le Marchand L, Potter J, Slattery ML, Zanke B, Baron JA, Caan BJ, Chanock SJ, Berndt SI, Stelling D, Fuchs CS, Hoffmeister M, Butterbach K, Du M, James Gauderman W, Gunter MJ, Lemire M, Ogino S, Lin J, Hayes RB, Haile RW, Schoen RE, Warnick GS, Jenkins MA, Thibodeau SN, Schumacher FR, Lindor NM, Kolonel LN, Hopper JL, Gong J, Seminara D, Pflugeisen BM, Ulrich CM, Qu C, Duggan D, Cotterchio M, Campbell PT, Carlson CS, Newcomb PA, Giovannucci E, Hsu L, Chan AT, Peters U, Chang-Claude J. CYP24A1 variant modifies the association between use of oestrogen plus progestogen therapy and colorectal cancer risk. Br J Cancer. 2016 Jan 19;114(2):221-9. doi: 10.1038/bjc.2015.443

Dadvand P, Nieuwenhuijsen MJ, Esnaola M, Forns J, Basagana X, Alvarez-Pedrerol M, Rivas I, Lopez-Vicente M, De Castro Pascual M, Su J, Jerrett M, Querol X, Sunyer J. Green spaces and cognitive development in primary schoolchildren. Proc Natl Acad Sci U S A. 2015 Jun 30;112(26):7937-42. doi: 10.1073/pnas.1503402112

Bennett L, Zhao Z, Barber B, Zhou X, Peeters M, Zhang J, Xu F, Wiezorek J, Douillard JY. Health-related quality of life in patients with metastatic colorectal cancer treated with panitumumab in first- or second-line treatment. Br J Cancer. 2011 Nov 1;105(10):1495-502.

Gonzalez-Perez V, Stack K, Boric K, Naranjo D. Reduced voltage sensitivity in a K+-channel voltage sensor by electric field remodeling. Proc Natl Acad Sci U S A. 2010 Mar 16;107(11):5178-83. doi: 10.1073/pnas.1000963107

Dietrich K, Schned A, Fortuny J, Heaney J, Marsit C, Kelsey KT, Karagas MR. Glucocorticoid therapy and risk of bladder cancer. Br J Cancer. 2009 Oct 20;101(8):1316-20. doi: 10.1038/sj.bjc.6605314

Carsin AE, Sharp L, Cronin-Fenton DP, Ceilleachair AO, Comber H. Inequity in colorectal cancer treatment and outcomes: a population-based study. Br J Cancer. 2008 Jul 22;99(2):266-74. doi: 10.1038/sj.bjc.6604467

Langagergaard V, Gislum M, Skriver MV, Norgard B, Lash TL, Rothman KJ, Sorensen HT. Birth outcome in women with breast cancer. Br J Cancer. 2006 Jan 1;94(1):142-6.

Bacolla A, Jaworski A, Larson JE, Jakupciak JP, Chuzhanova N, Abeysinghe SS, O'Connell CD, Cooper DN, Wells RD. Breakpoints of gross deletions coincide with non-B DNA conformations. Proc Natl Acad Sci U S A. 2004;101(39):14162-7.

Yang J, Bogerd HP, Peng S, Wiegand H, Truant R, Cullen BR. An ancient family of human endogenous retroviruses encodes a functional homolog of the HIV-1 Rev protein. Proc Natl Acad Sci U S A. 1999 Nov 9;96(23):13404-8.

Yang J, Malik HS, Eickbush TH. Identification of the endonuclease domain encoded by R2 and other site-specific, non-long terminal repeat retrotransposable elements. Proc Natl Acad Sci U S A. 1996 Jul 6;96(14):7847-52.