News

What is happening in the Endpoint Outcomes world.

 

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.

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Christine Kim as a Research Associate and Coordinator in our Long Beach office.

Prior to Endpoint Outcomes, Christine worked as an undergraduate research assistant for Urban Catholic Teacher Corps for a study that measured elementary students’ faith and grit. Additionally, she worked at Dana-Farber Cancer Institute as an undergraduate research assistant to collect feedback on a program algorithm focused on improving cancer symptom management through clinical decision support. Christine holds a Bachelor of Arts degree in Applied Psychology and Human Development and Psychology from Boston College.

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Adrian Jewett to our Long Beach office. As a Senior Research Associate, Adrian will support the psychometrics and statistics team. Prior to Endpoint Outcomes, Adrian worked at the Claremont Evaluation Center, where he helped to manage and analyze educational evaluative data regarding curriculum impact on student outcomes. His research interests lie primarily in the application of factor analysis, structural equation models, and robust estimation. Adrian holds a Bachelor of Arts degree in Honors Psychology from California State University, Northridge, and a Master of Arts degree in Organizational Behavior & Evaluation from Claremont Graduate University.

Welcome to Endpoint Outcomes

Endpoint Outcomes is please to welcome two new team members to our Boston office: Megha Kamra as a Project Manager and Kathy Vong as a Research Associate.

Prior to Endpoint Outcomes, Megha worked in hospital operations for a digital healthcare startup and hospital administration at a breast cancer center. She also worked in the retail industry as a Project Manager in product content strategy. Megha graduated from Boston University with an MBA and Master in Public Health and completed her undergraduate education in Public Health from Rutgers University.

Prior to Endpoint Outcomes, Kathy interned at The Fenway Institute where she worked alongside the behavioral health sciences team to study the feasibility and acceptability of a digital HIV pre-exposure prophylaxis pill to monitor medication adherence in high-risk populations. Additionally, Kathy has worked as a research assistant in a mental health lab dedicated to developing digital interventions for individuals with severe mental illness. Kathy holds a Bachelor of Arts degree in Biology with a minor in Public Health from Boston University.

Happy Hour Revised

The COVID-19 pandemic has changed the way we all work, but it is good to know we can still take a break to have a virtual happy hour with some of the team members in Boston.

The Burden of Kabuki Syndrome

A manuscript co-authored by Shayna Egan, Maggie Paulich and Chris Evans reports on the significant health-related quality of life burden associated with Kabuki Syndrome.  The results were recently published: Theodore-Oklota C, Egan S, Paulich M, Evans CJ, Hartman DS, Hoffman DL, Bjornsson HT.  Caregiver-reported clinical characteristics and the burden associated with Kabuki syndrome.  Am J Med Genet 2020;1-9.

Development of PRO Measures in a Rare Disease

A manuscript co-authored by Shayna Egan, Ted Wells and Chris Evans documents to qualitative research conducted to develop two new PRO measures to assess symptoms and impacts in Pyruvate Kinase Deficiency.  The results were recently published: Salek S, Boscoe AN, Piantedosi S, Egan S, Evans CJ, Wells T, Cohen J, Klassen RJ, Grace R, Storm M.  Development of the Pyruvate Kinase Deficiency Diary (PKDD) and Pyruvate Kinase Deficiency Impact Assessment (PKDIA): Disease-Specific Assessments. Eur J Haematol. 2020; 104: 427-434.

ISPOR “Virtual” Presentations

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

  • Development of a Pediatric Faces Scale for use in Multiple Disease Areas
  • The Humanistic Burden of Glycogen Storage Disease Type Ia: The Impact on Symptoms, Diet, and Health-related Quality of Life
  • Development of Conceptual Frameworks and Pilot PRO Measures in OTC Deficiency
  • Development of Illustrations for Use in Pediatric Qualitative Interviews
  • Itch Reported Outcome Tool For Caregivers Of Pediatric Patients With Cholestatic Liver Disease: An Analysis Of Validation And Scoring From The ICONIC Maralixibat Study
  • A descriptive framework for understanding patterns of in intensive longitudinal patient diaries