Ellie Wagner

Publications & Presentations

Ellie Wagner Bio

Publications & presentations

 

User & Patient Experience in Clinical Research

JOURNAL ARTICLES

  • Rahman, W., Abdelkader, A., Lee, S., Yang, P., Islam, S., Adnan, T., Hasan, M., Wagner, E., Park, S., Dorsey, R., Schwartz, C., Jaffe, K., and Hoque, E. (2024). A User-Centered Framework to Empower People with Parkinson’s Disease. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies, 7(4), 1-29. [Publisher] [PDF]

  • Waddell, E., Dinesh, K., Spear, K., Elson, M., Wagner, E., Curtis, M., Mitten, D., Tarolli, C., Sharma, G., Dorsey, R., and Adams, J. (2021). GEORGE ®: A Pilot Study of a Smartphone Application for Huntington's Disease. Journal of Huntington Disease, 10(2), 293-301. [Publisher] [PDF]

  • Rahman, W., Lee, S., Islam, S., Nikhil Antony, V., Ratnu, H., Rafayet Ali, M., Al Mamun, A., Wagner, E., Jensen-Roberts, S., Waddell, E., Myers, T., Pawlik, M., Soto, J., Coffey, M., Sarkar, A., Schneider, R., Tarolli, C., Lizarraga, K., Adams, J., Little, M., Dorsey, R., and Hoque, E. (2021). Detecting Parkinson’s Disease from an Online Speech-Task: Observational Study. Journal of Medical Internet Research, 23(10), e26305. [Publisher] [PDF]

CONFERENCE ABSTRACTS

  • Wagner, E., Waddell, E., Dorsey, R., and Adams, J. (2022). GEORGE® Huntington’s Disease App: Usability Assessment and Design Implications. American Neurological Association (ANA) Annual Meeting. Chicago, Illinois. Annals of Neurology, 92(Suppl. 29), S115. *Selected as Abstract of Distinction [PDF]

  • Wagner, E., and Li, K. (2022). JourneyMap: A Visual Resource to Reduce Coordinator Burden During Virtual Study Visits. International Congress of Parkinson’s Disease and Movement Disorders. Virtual. Movement Disorders, 37(Suppl. 2), S514. [Publisher]

  • Wagner, E., Waddell, E., Dorsey, R., and Adams, J. (2022). A User Experience Evaluation of a Huntington’s Disease App: Implications for Mobile-First Design. International Congress of Parkinson’s Disease and Movement Disorders. Virtual. Movement Disorders, 37(Suppl. 2), S207. [Publisher]

  • Lettenberger, S., Jensen-Roberts, S., Wagner, E., Pawlik, M., Soto, J., Hartman, E., Yang, P., Tarolli, C., Schneider, R., Adams, J., Dorsey, R., Myers, T. (2022). What Research Participants Want to Know: Feedback from Participants in an Observational Study of Parkinson’s Disease. International Congress of Parkinson’s Disease and Movement Disorders. Madrid, Spain. Movement Disorders, 37(Suppl. 2), S504. [Publisher]

  • Soto, J., Wagner, E., Glidden, A., Hartman, E., Lettenberger, S., Yang, P., Zafar, M., Pawlik, M., Kaplan, A., Torres, G., Dorsey, R., and Schneider, R. (2022). Evaluating the Implementation and Impact of a Neurology Research Contact Registry on Recruitment for Parkinson’s Disease Research Studies. Parkinson’s Study Group (PSG) Annual Symposium. Phoenix, Arizona. Movement Disorders, 37, S207. [PDF]

  • Jensen-Roberts, S., Myers, T., Wagner, E., Pawlik, M., Soto, J., Tarolli, C., Schneider, R., Adams, J., and Dorsey, R. (2022). Return of Individual Research Reports in an Observational Study of Parkinson’s Disease: Participant Preferences and Influences on Future Research Participation. American Academy of Neurology (AAN) Annual Meeting. Virtual. Neurology, 98(18, Suppl. 539). [Publisher]

POSTERS

  • Yang, P., Rahman, W., Lee, S., Abdelkader, A., Islam, S., Antony, V., Wagner, E., Spann, J., Soto, J., Kaplan, A., Dorsey, R., and Hoque, E. (January 2022). A Video Analytics Tool to Assess Parkinson’s Disease Risk. Neurotherapeutics Symposium: Integrating Equity within Translational Research. University of Rochester Medical Center and the Ohio State University Wexner Medical Center. Virtual.

  • Wagner, E. and Li, K. (December 2021).  JourneyMap: Advance Low-Burden Remote Digital Health Study for Aging Populations with In-Home Monitoring System. Design for Active Aging: Living Better Together Workshop. Research Center for Aging User Experience and Service System Design, The Future Laboratory. Tsinghua University, Beijing, China.

  • Wagner, E., Waddell, E., Adams, J., and Dorsey, R. (June 2020). Usability Evaluation of a Huntington Disease App: A User-Centered Approach. Brain Tech Project Summit. Virtual.    

Development of Patient-Reported Outcome Measures

JOURNAL ARTICLES

  • Seabury, J., Varma, A., Weinstein, J., Rosero, S. J., Engebrecht, C., Khosa, S., Zizzi, C., Wagner, E., Alexandrou, D., Cohen, B., Dilek, N., Heatwole, J., Lynch, D., Park, C., Wells, M., Subramony, S., & Heatwole, C. (2024). Friedreich Ataxia Caregiver-Reported Health Index: Development of a Novel, Disease-Specific Caregiver-Reported Outcome Measure. Neurology: Clinical Practice, 14(3), e200303.

  • Varma, A., Weinstein, J., Seabury, J., Rosero, S., Wagner, E., Zizzi, C., Kaat, A., Luebbe, E., Dilek, N., Heatwole, J., Saubermann, L., Temple, L., Rogoff, S., and Heatwole, C. (2024). The Crohn’s Disease–Health Index: Development and Evaluation of a Novel Outcome Measure. Journal of Clinical Gastroenterology, 10-1097. [Publisher] [PDF]

  • Seabury, J., Rosero, S., Varma, A., Weinstein, J., Engebrecht, C., Dilek, N., Heatwole, J., Alexandrou, D., Cohen, B., Larkindale, J., Lynch, D., Park, C., Subramony, S., Wagner, E., Walther, S., Wells, M., Zizzi, C., and Heatwole, C. (2023). Friedreich's Ataxia-Health Index: Development and Validation of a Novel Disease-Specific Patient-Reported Outcome Measure. Neurology: Clinical Practice, 13(5), e200180. [Publisher] [PDF]

  • Varma, A, Weinstein, J., Seabury, J., Rosero, S., Engebrecht, C., Wagner, E., Zizzi, C, Luebbe, E., Dilek, N., McDermott, M., Kissel, J., Sansone, V., Heatwole, C. (2023). The Facioscapulohumeral Muscular Dystrophy-Health Index: Development and Evaluation of a Disease-Specific Outcome Measure. Muscle & Nerve, 68(4), 422-431. [Publisher] [PDF]

  • Varma, A., Weinstein, J., Seabury, J., Rosero, S., Zizzi, C., Alexandrou, D., Wagner, E., Dilek, N., McDermott, M., Heatwole, J., Wuu, J., Caress, J., Bedlack, R., Granit, V., Statland, J., Mehta, P., Benatar, M., Kaat, A., and Heatwole, C. (2023). The Amyotrophic Lateral Sclerosis-Health Index (ALS-HI): Development and Evaluation of a Novel Outcome Measure. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 24(5-6), 514-522. [Publisher] [PDF]

  • Rosero, S., Weinstein, J., Seabury, J., Zizzi, C., Wagner, E., Varma, A., Heatwole, J., Alexandrou, D., Dilek, N., Johnson, B., and Heatwole, C. (2022). Disease Burden in Children with Spinal Muscular Atrophy (SMA): Results from a Large Cross-Sectional Study. Journal of Child Neurology, 38(1-2), 52-63. [Publisher] [PDF]

  • Zizzi, C., Seabury, J., Rosero, S., Alexandrou, D., Wagner, E., Weinstein, J., Varma, A., Dilek, N., Heatwole, J., McDermott, M., Hussain, S., Wuu, J., Caress, J., Bedlack, R., Granit, V., Statland, J., Mehta, P., Benatar, M., and Heatwole, C. (2022). Patient Reported Impact of Symptoms in Amyotrophic Lateral Sclerosis (PRISM-ALS): A National, Cross-Sectional Study. Lancet eClinical Medicine, 55, 101768. [Publisher] [PDF]

  • Varma, A., Weinstein, J., Seabury, S., Rosero, S., Wagner, E., Zizzi, C., Luebbe, E., Dilek, N., McDermott, M., Heatwole, J., Saubermann, L., Temple, L., Rogoff, S., and Heatwole, C. (2022). Patient-Reported Impact of Symptoms in Crohn’s Disease (PRISM-CD). The American Journal of Gastroenterology, 117(12), 2033-2045. [Publisher] [PDF]

  • Seabury, J., Alexandrou, D., Dilek, N., Greco, B., Heatwole, J., Larkindale, J., Lynch, D., Park, C., Rosero, S., Subramony, S., Varma, A., Wagner, E., Walther, S., Weinstein, J., Wells, M., Zizzi, C., and Heatwole, C. (2023). Patient-Reported Impact of Symptoms in Friedreich Ataxia. The Journal of Neurology, 100(8), e808-e821. [Publisher] [PDF]

  • Rosero, S., Weinstein, J., Seabury, J., Zizzi, C., Wagner, E., Varma, A., Heatwole, J., Alexandrou, D., Dilek, N., Johnson, B., and Heatwole, C. (2022). Disease Burden in Children With Spinal Muscular Atrophy: Results From a Large Cross-Sectional Study. Journal of Child Neurology, 38(1-2), 52-63. [Publisher] [PDF]

  • Varma, A., Weinstein, J., Seabury, J., Rosero, S., Wagner, E., Zizzi, C., Kaat, A., Luebbe, E., Dilek, N., McDermott, M., Heatwole, J., Saubermann, L., Temple, L., Rogoff, S., and Heatwole, C. (2022). The Crohn’s Disease Health-Index (CD-HI): Development and Evaluation of a Novel Outcome Measure. Inflammatory Bowel Diseases. [Under Review]

CONFERENCE ABSTRACTS

  • Preshetha, K., Varma, A. Weinstein, J., Seabury, J., Rosero, S., Zizzi, C., Alexandrou, D., Wagner, E., Engebrecht, C., Schupe, C., Irwin, C., Dilek, N., Heatwole, J., Wuu, J., Caress, J., Bedlack, R., Granit, V., Statland, J., Mehta, P., Benatar, M., Kaat, A., Heatwole, C. (upcoming, 2024). The Amyotrophic Lateral Sclerosis-Health Index (ALS-HI): Development and Evaluation of a Novel Outcome Measure. Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) Annual Meeting. Clearwater Beach, Florida.

  • Rosero, S., Varma, A., Seabury, J., Weinstein, J., Wagner, E., Zizzi, C., Engebrecht, C., Kaat, A., Luebbe, E., Dilek, N., Heatwole, J., Saubermann, L., Temple, L., Rogoff, S., Heatwole, C. (2023). Development and Validation of a Patient-Reported Outcome Measure for Crohn’s Disease: The Crohn’s Disease-Health Index (CD-HI), A Fully Validated Tool to Bolster Clinical Trial and Research Infrastructure. Crohn’s & Colitis Congress. Denver, Colorado. Inflammatory Bowel Diseases, 29(Suppl. 1), S74-75. [Publisher] [PDF]

  • Weinstein, J., Seabury, J., Rosero, S., Varma, A., Zizzi, C., Wagner, E., Alexandrou, D., Dilek, N., McDermott, M., Hussain, S., Wuu, J., Caress, J., Bedlack, R., Granit, V., Statland, J., Mehta, P., Heatwole, J., Benatar, M., Heatwole, C. (2022). The Amyotrophic Lateral Sclerosis-Health Index (ALS-HI): A Novel Outcome for Measuring How Patients with ALS Feel and Function in Clinical Trials. Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) Annual Meeting. Clearwater Beach, Florida. Muscle & Nerve, 66(Suppl. 2), S38. [Publisher] [PDF]

  • Seabury, J., Weinstein, J., Rosero, S., Varma, A., Wagner, E., Zizzi, C., Dilek, N., McDermott, M., Kaat, A., Saubermann, L., Temple, L., Rogoff, S., Heatwole, C., and Rose, Z. (2022). Development and Validation of the Crohn’s Disease-Health Index (CD-HI), a Clinically-Relevant, Disease-Specific Patient Reported Outcome Measure. Crohn’s & Colitis Congress. Las Vegas, Nevada. Inflammatory Bowel Diseases, 28(Suppl. 1), S73. [Publisher] [PDF]

  • Seabury, J., Weinstein, J., Rosero, S., Varma, A., Wagner, E., Zizzi, C., Dilek, N., Kaat, A., Saubermann, L., Temple, L., Rogoff, S., and Heatwole, C. (2021). The Crohn’s Disease-Health Index (CD-HI): Development and Validation of a Novel, Disease-Specific Patient Reported Outcome Measure for Clinical Trials. Advances in Inflammatory Bowel Diseases. Orlando, Florida. The American Journal of Gastroenterology, 116(Suppl. 1), S12. [Publisher] [PDF]

  • Seabury, J., Zizzi, C., Weinstein, J., Wagner, E., Rosero, S., Dilek, N., Kaat, A., McDermott, M., Saubermann, L., Temple, L., Rogoff, S., and Heatwole, C. (2021). Results from a National Cross-Sectional Study of Disease Burden in Crohn’s Disease. Crohn’s & Colitis Congress. Virtual. Gastroenterology, 160(3), S18 and Inflammatory Bowel Diseases, 27(1), S13. [Publisher] [PDF]

  • Zizzi, C., Wagner, E., Weinstein, J., Seabury, J., Dilek, N., McDermott, M., Hussain, S., Wuu, J., Caress, J., Bedlack, R., Granit, V., Statland, J., Mehta, P., Benatar, M., and Heatwole, C. (2020). Results from a National Cross-Sectional Study of Disease-Burden in Amyotrophic Lateral Sclerosis (ALS). Muscle Study Group Annual Scientific Meeting. Virtual. RRNMF Neuromuscular Journal, 1(4), 51. [PDF]

  • Zizzi, C., Wagner, E., Benatar, M., and Heatwole, C. (2019). What Matters Most to Patients with ALS: Initial Validation of the ALS Health Index (ALS-HI), a Multifaceted Patient Reported Outcome Measure. 30th International Symposium on ALS/MND. Perth, Australia. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, Theme 10 Disease Stratification and Phenotyping of Patients, 20(Suppl. 2), S289-S300. [Publisher] [PDF]

  • Zizzi, C., Wagner, E., Hussain, S., Benatar, M., and Heatwole, C. (2019). Initial Validation of the ALS Health Index (ALS-HI), a Multi-Faceted Patient Reported Outcome Measure: Results from Qualitative Patient Interviews. Muscle Study Group Annual Scientific Meeting. Snowbird, Utah. Muscle & Nerve, 60(2), S2.  [PDF]

CONFERENCE TALKS

  • Rosero, S., Larkindale, J., Walther, S., Seabury, J., Varma, A., Wagner, E., Weinstein, J., Dilek, N., Heatwole, J., Rose, Z., Zizzi, C., Lynch, D., Park, C., Wells, M., and Heatwole, C. (November 2022). The FA-HI & FACR-HI: Development and Validation of Two Novel Friedreich’s Ataxia Outcome Measures. International Congress for Ataxia Research. Dallas, Texas.

  • Zizzi, C., Weinstein, J., Wagner, E., Greco, B., Larkindale, J., Subramony, S.H., and Heatwole, C. (September 2020). Identification of the Most Important Friedreich’s Ataxia Symptoms: The First Step in Developing the Friedreich’s Ataxia Health Index (FA-HI). Friedreich's Ataxia Biomarkers & Clinical Endpoint Conference. Virtual. 

POSTERS

  • Shupe, C., Seabury, J., Varma, A., Rosero, S., Weinstein, J., Engebrecht, C., Irwin, C., Kanagaiah, P., Larkindale, J., Walther, S., Wagner, E., Dilek, N., Heatwole, J., Zizzi, C., Lynch, D., Park, C., Wells, M., Heatwole, C. (November 2024). Longitudinal Endpoint Optimization to Provide an Assessment of Relevant Drugs in Friedreich’s Ataxia (LEOPARD-FA): A Remote, 18-Month Longitudinal Study in Friedreich’s Ataxia. International Congress for Ataxia Research. London, UK.

  • Varma, A., Weinstein, J., Seabury, J., Rosero, S., Engebrecht, C., Wagner, E., Zizzi, C., Luebbe, E., Dilek, N., McDermott, M., Kissel, J., Sansone, V., Heatwole, C. (June 2023). Development and Validation of the Facioscapulohumeral Muscular Dystrophy-Health Index (FSHD-HI), a Disease-Specific Patient-Reported Outcome Measure to Facilitate Clinical Trials. Annual Facioscapulohumeral Muscular Dystrophy (FSHD) Society International Research Congress. Milan, Italy.

  • Zizzi, C., Weinstein, J., Seabury, J., Rosero, S., Wagner, E., Dilek, N., McDermott, M., Hussain, S., Wuu, J., Caress, J., Bedlack, R., Granit, V., Statland, J., Mehta, P., Benatar, M., and Heatwole, C. (December 2020). The Amyotrophic Lateral Sclerosis Health Index (ALS-HI): A Measure of Prioritized Symptomatic Themes in ALS. 31st International Symposium on ALS/MND. Virtual.

  • Zizzi, C., Weinstein, J., Seabury, J., Rosero, S., Wagner, E., Dilek, N., McDermott, M., Hussain, S., Wuu, J., Caress, J., Bedlack, R., Granit, J., Statland, J., Mehta, P., Benatar, M., and Heatwole, C. (September 2020). The Amyotrophic Lateral Sclerosis – Health Index (ALS-HI): A Novel Outcome for Measuring How a Patient Feels and Functions in Clinical Trials. Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) Annual Meeting. Virtual.

  • Zizzi, C., Wagner, E., Greco, B., Larkindale, J., Corben, L., Subramony, S.H., and Heatwole, C. (November 2019). The Identification of the Most Important Friedreich’s Ataxia Symptoms: Results from a Patient and Caregiver Study. International Ataxia Research Conference. Washington, DC.

Health Disparities

JOURNAL ARTICLES

  • Paracha, M., Wagner, E., Brumfield, O., Winninghoff, J., Wright , J., Rotoli, J., and Hauser, P. (2023). Medication-Related Experience of Deaf American Sign Language Users. Health Literacy Research and Practice, 7(4), e215-e224. [Publisher] [PDF]

CONFERENCE TALKS

  • Paracha, M., Wagner, E., Brumfield, O. (November 2022). Medication-Related Experience of Deaf ASL Users. Annual Meeting of the American Public Health Association (APHA). Boston, Massachusetts.

  • Paracha, M., Asiamah, M., Essex, B., Wagner, E., Brumfield, O. (August 2022). Medication-Related Experience of Deaf ASL Users. Association of Medical Professionals with Hearing Losses (AMPHL) Annual Conference. Las Vegas, Nevada. 

POSTERS

  • Paracha, M., Asiamah, M., Wagner, E., Brumfield, O.^, Essex, B. (2023). Medication literacy: Toward a web-based assessment for deaf ASL users. American Public Health Association Annual (APHA). Atlanta, Georgia.

  • Essex, B., Li, K., Brumfield, O., Wagner, E., Paracha, M. (August 2022). RxASL: Medication-Related Experiences of Deaf ASL Users. DEAF/HH Scientists ROC Conference. University of Rochester and Rochester Institute of Technology, Rochester, NY.

  • Paracha, M., Wagner, E., Brumfield, O., and Li, K. (April 2022). RxASL: Mixed-Method Study on Accessible Medication Information. “Innovative Spotlight” video. Equity, Diversity, and Inclusion Leadership Summit. University of Rochester, Rochester, New York. Virtual.

  • Paracha, M., Wagner, E., Brumfield, O., and Venuto, C. (March 2020). RxASL: Improving Medication Literacy for the Deaf Community. Accepted to the University of Rochester Diversity Conference: Equity Across Our Communities; not presented due to COVID-19 cancellation.

  • Paracha, M., Wagner, E., Javidnia, M., and Venuto, C. (August 2019). RxComm: A Proposed Tool to Make Prescription Drug Information Accessible, Accurate, and Actionable for ASL Users. Deaf-Engaged Academic Forum (DEAF ROC). University of Rochester, Rochester, New York.