Publications

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Displaying 1 through 29 of 29 publications.

Slota C, Norcross L, Comerford E, Sasane M, Zheng Y, Gnanasakthy A. Critical comments by Food and Drug Administration Reviewers on patient-reported outcomes in Food and Drug Administration Regulatory Submissions (2018-2021) [Editor's Choice]. Value Health. 2024 Jun;27(6):755-66. doi: 10.1016/j.jval.2024.02.011

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.

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

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.

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

Carrillo N, Malicdan MC, Leoyklang P, Shrader JA, Joe G, Slota C, Perreault J, Heiss JD, Class B, Liu CY, Bradley K, Jodarski C, Ciccone C, Driscoll C, Parks R, Van Wart S, Bayman L, Coffey CS, Quintana M, Berry SM, Huizing M, Gahl WA. Safety and efficacy of N-acetylmannosamine (ManNAc) in patients with GNE myopathy: an open-label phase 2 study. Genet Med. 2021 Nov;23(11):2067-75. doi: 10.1038/s41436-021-01259-x

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

English M, Stoykova M, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study of the burden of vasomotor symptoms associated with menopause and content validity of two PROMIS sleep measures in menopausal women. Presented at the 2021 IMS Conference (Conference cancelled); February 4, 2021. Previously presented at the NAMS 2020 Virtual Meeting.

Doward LC, Balp M-M, Twiss J, Slota C, Cryer D, Brass CA, Anstee QM, Sanyal AJ. Development of a patient-reported outcome measure for non-alcoholic steatohepatitis (NASH-CHECK): results of a qualitative study. Patient. 2020 Dec 18. doi: 10.1007/s40271-020-00485-w

Davidson D, Hsieh A, Vera-Llonch M, Stevenson M, Brown TM, Slota CM, Fehnel SE. Development of a novel patient-reported outcome measure for symptoms and impacts of familial chylomicronemia syndrome. Poster presented at the 2020 Virtual National Lipid Association Scientific Sessions; December 10, 2020.

English M, Stoykova B, Slota C, Doward L, Siddiqui E, Crawford R, DiBenedetti D. Qualitative study of the burden of vasomotor symptoms associated with menopause and content validity of two PROMIS sleep measures in menopausal women. Poster presented at the NAMS 2020 Virtual Meeting; September 30, 2020.

Penner I-K, McDougall F, Brown TM, Slota C, Doward L, Julian L, Belachew S, Miller D. Exploring the impact of fatigue in progressive multiple sclerosis: a mixed-methods analysis. Mult Scler Relat Disord. 2020 Aug;43:102207. doi: 10.1016/j.msard.2020.102207

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

Davidson D, Stevenson M, Llonch MV, Hsieh A, Brown TM, Slota C, Fehnel S. Development of a novel patient-reported outcome measure symptoms and impacts of familial chylomicronemia syndrome. J Clin Lipidol. 2020 Jul;14(4):P571.

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.

Carrillo N, Huizing M, Leoyklang P, Quintana M, Shrader J, Bradley K, Slota C, Perreault J, Class B, Ciccone C, Parks R, Joe G, Heiss J, Berry S, Malicdan MC, Gahl W. Open-label phase 2 clinical trial of ManNAc for GNE myopathy. Poster presented at the American Academy of Neurology 71st Annual Meeting; May 6, 2019. Philadelphia, PA.

Quintana M, Shrader J, Slota C, Joe G, McKew JC, Fitzgerald M, Gahl WA, Berry S, Carrillo N. Bayesian model of disease progression in GNE myopathy. Stat Med. 2019 Apr 15;38(8):1459-74. doi: 10.1002/sim.8050

Slota C, Bevans M, Yang L, Shrader J, Joe G, Carrillo N. Patient reported outcomes in GNE myopathy: incorporating a valid assessment of physical function in a rare disease. Disabil Rehabil. 2018 May;40(10):1206-13. doi: 10.1080/09638288.2017.1283712

Doward L, Balp MM, Twiss J, Slota C, Cryer D, Langford A, Collen R, Agashivala N, Brass C, Anstee QM, Sanyal A. Measuring what matters to patients: the development of the NASH-CHECK, a new patient-reported outcome instrument for nonalcoholic steatohepatitis. Poster presented at the 2018 EASL International Liver Conference; April 13, 2018. Paris, France. [abstract] J Hepatol. 2018 Apr; 68(Suppl 1):S570.

Twiss J, Balp M, Doward L, Slota C, Cryer D, Langford A, Collen R, Agashivala N, Brass C, Sanyal A, Anstee QM. Development of a new patient-reported outcome measure for non-alcoholic steatohepatitis: NASH-check. Poster presented at the 2017 ISPOR 20th Annual European Congress; November 7, 2017. Glasgow, Scotland.

Doward LC, Balp M-M, Twiss J, Slota C, Cryer D, Langford A, Collen R, Agashivala N, Brass CA, Anstee QM, Sanyal AJ. Understanding the patient-perceived impact of nonalcoholic steatohepatitis: raising the volume on a silent disease. Poster presented at the 2017 AASLD Liver Meeting; October 23, 2017. Washington, DC. [abstract] Hepatology. 2017 Jul; 66(1 Suppl):1182A.

Garland J, Stephen J, Class B, Gruber A, Ciccone C, Poliak A, Hayes CP, Singhal V, Slota C, Perreault J, Gavrilova R, Shrader JA, Chittiboina P, Joe G, Heiss J, Gahl WA, Huizing M, Carrillo N, Malicdan MCV. Identification of an Alu element-mediated deletion in the promoter region of GNE in siblings with GNE myopathy. Mol Genet Genomic Med. 2017 Jun 14;5(4):410-7. doi: 10.1002/mgg3.300

Slota C. Patient reported outcome development in rare diseases. Presented at the Food and Drug Administration, Division of Gastroenterology and Inborn Errors Products All-Hands Meeting; June 2016. Silver Spring, MD.

Slota C, Quintana M, Shrader J, Joe G, McKew J, Fitzgerald M, Gahl WA, Berry S, Carrillo N. GNE myopathy: disease progression determined by longitudinal natural history data and mathematical modeling. Poster presented at the Society for Inherited Metabolic Disorders Conference; April 2016. Ponte Vedra Beach, FL. [abstract] Mol Genet Metab. 2016 Apr; 117(2016):221-98.

Slota C, Shi A, Chen G, Bevans M, Weng NP. Norepinephrine preferentially modulates memory CD8 T cell function inducing inflammatory cytokine production and reducing proliferation in response to activation. Brain Behav Immun. 2015 May;46:168-79.

Slota C, Ulrich C, Miller-Davis C, Baker K, Wallen G. Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial. BMC Palliat Care. 2014 Sep 5;13:43. doi: 10.1186/1472-684X-13-43.

Slota C, Shi A, Chen G, Weng NP. The effect of norepinephrine on CD8 T cell subsets in healthy human adults. Poster presented at the 2014 American Association of Immunologists Conference; May 2014. Pittsburgh, PA. [abstract] J Immunol. 2014 May 1; 192(1 Suppl):115.12.

Slota C. Evolving perceptions of aging and the good death. Presented at the Victor A. Bressler Humanities in Medicine Retreat; November 2011. Atlantic City, NJ.

Slota C. The impact of technology on the perceptions of end-of-life and the good death. Presented at the Grand Round Series at the Hospital of the University of Pennsylvania; July 2011. Philadelphia, PA.