News

What is happening in the Endpoint Outcomes world.

 

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Harlow Sharp as a Research Associate in our Long Beach office. Prior to joining Endpoint Outcomes, Harlow was the Editor-in-Chief of Eleven, an undergraduate research publication in Sociology. Additionally, he has conducted research on the relationships between food culture and gentrification in urban areas. Harlow holds a Bachelor of Arts degree in Sociology and Media Studies from University of California, Berkeley.

Characterizing the humanistic burden of Wilson Disease

A manuscript co-authored by Shayna Egan, Maggie Paulich, Elliott Blatt and Chris Evans reports on a survey of patients with Wilson Disease and their caregivers. This is the first study in this rare neurometabolic disease to report on the multidimensional impact of this disease directly by those affected by the disease: Dress A, Theodore-Oklota C, Egan S, Paulich M, Blatt E, Evans CJ. The patient-reported experience of living with Wilson disease. Future Rare Disease 2021 (ePub ahead of print).

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Charis Yousefian as a Senior Research Manager in our Boston office. Prior to joining Endpoint Outcomes, Charis worked as a Health Researcher at the American Institutes for Research, focusing on projects related to delivery systems and improvement, and as a Research Associate at Mapi within the Patient-Centered Outcomes group. Charis has experience in a variety of therapeutic areas, including rheumatoid arthritis, chronic fatigue, chronic pain, and mental illness. Charis graduated with a Bachelor’s degree in Sociology from Goucher College and a Master’s degree in Applied Sociology, with a focus on health and illness, from the University of Maryland Baltimore County.

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Dani Brooks as a Senior Research Associate in our Boston office. Prior to joining Endpoint Outcomes, Dani worked at Dana Farber Cancer Institute and Boston University School of Public Health. Dani holds a Bachelor of Arts degree in Women and Gender Studies with a minor in Music from Wellesley College as well as a Master in Public Health degree from Boston University.

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Julia Price as a Senior Research Associate in our Long Beach office. Prior to joining Endpoint Outcomes, Julia worked at NORC at the University of Chicago where she provided research and management support for projects spanning a variety of public health topics including tobacco surveillance and control, health equity, transportation safety, and emergency preparedness. Prior to NORC, Julia worked on grant-funded research study at a Surgical Weight Loss Clinic at the Penn State Medical Center. Julia holds a Bachelor of Science degree in Health Science with a minor in Women and Gender Studies from Boston University.

Continuing work on the Living with Pulmonary Fibrosis (L-PF) questionnaire

A manuscript co-authored by Nate Johnson and Chris Evans reports on our continued work in the field of respiratory diseases and our effort to support Jeff Swigris, DO at National Jewish Health, Denver, CO in the validation and FDA Drug Development Tool Qualification of the L-PF measure: Swigris J, Andrae DA, Churney T, Johnson N, Scholand MB, White ES, Matsui A, Raimundo K, Evans CJ. Development and initial validation analyses of the living with idiopathic pulmonary fibrosis questionnaire.  American Journal of Respiratory and Critical Care Medicine 2020;12: 1689-1697.

Welcome to Endpoint Outcomes

Endpoint outcomes is pleased to welcome Kailee White as a Research Associate in our Long Beach office. Prior to joining Endpoint Outcomes, Kailee worked as an undergraduate research assistant in the Social Perception Lab, running multiple studies that examined the role of social identity in stereotyping and prejudice. In this position, she contributed to both electroencephalogram (EEG) and behavioral studies. Kailee holds a Bachelor of Science degree in Psychological and Brain Sciences from the University of California, Santa Barbara.

Upcoming ISOQOL “Virtual” Presentations

Despite a virtual conference due to COVID-19, the following research by Endpoint Outcomes will be published on the conference website:

  • Evaluating intercoder reliability in qualitative research analysis
  • Development of a novel, non-disease specific peditaric faces scale
  • Describing patterns in longitudinal diary data
  • Examination of a modified approach to the Delphi technique in health outcomes research

In addition, Dave Andrae and Brandon Foster will be leading a workshop on interpretation guidelines for clinical relevance of patient-reported outcome measures.

Development of a New Measure to Assess Patient-centered Outcomes in Vulvodynia

A manuscript co-authored by Julie Whyte and Chris Evans reports on the development of a novel measure to assess symptoms and impacts in females that experience vulvodynia.  There has been early interest by the research community in using this measure to assess patient-reported outcomes in routine and clinical practice. Goldstein AT, Quintana Diez PM, Kapanadze S, Cala ML, Evans CJ, Whyte JL, Christoph A. The vulvodynia experience questionnaire: qualitative development of a new patient-reported outcome measure for vulvodynia. The Journal of Sexual Medicine 2020;17:2055-2066.

Welcome to Endpoint Outcomes

Endpoint outcomes is pleased to welcome Subiksha Umakanth as a Research Associate in our Long Beach office. Prior to joining Endpoint Outcomes, Subiksha worked as an undergraduate research assistant for the Knowlton Lab of Cognitive Neuroscience on a study that investigated memory selectivity in schizophrenic patients. Subiksha holds a Bachelor of Science degree in Neuroscience from the University of California Los Angeles.