What is happening in the Endpoint Outcomes world.


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

New White Paper

Quantitative researchers at Endpoint Outcomes overview some of the history that underpins the scoring approaches that are used in clinical outcome assessments in a new white paper.

Highlights include:

    1. The contributions to instrument scoring from the fields of psychophysics, intelligence testing, scaling, attitude measurement, and classical and modern test theories
    2. The use of scoring approaches in medical research and a brief introduction into the mathematics that constitute scoring
    3. Potential consequences of different approaches to scoring

The white paper can be downloaded here and correspondence can be directed to:

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome a new senior research associate, Elliott Blatt, to our Boston office:

Prior to joining Endpoint Outcomes, Elliott worked at The Fenway Institute helping conduct a health needs assessment for transgender and non-binary populations. Elliott holds a Bachelor of Science degree in Biological Sciences from Wayne State University as well as a Masters in Public Health degree from Boston University.

You Cannot Keep Endpoint Outcomes Locked Up

Boston team members proved yet again, there isn’t an escape room that can hold them. Sadly, the same never seems to be true of the Long Beach office.  Clients are encouraged to contact the Boston office in the first instance to secure the most intelligent team members for their projects.

ISOQOL Presentations

Endpoint Outcomes will be presenting at the International Society for Quality of Life Research 26th Annual Conference in San Diego, California on October 20-23, 2019. Dave Andrae will be presenting on “Scoring methods: History, practices, and pragmatic implications for different options”. Martha Gauthier and Nate Johnson will be presenting on “Identification and recommendations of readability tests for the evaluation of clinical outcome assessments (COAs)”.

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Ian Clarkson as a new research associate to our Boston office:

Prior to joining Endpoint Outcomes, Ian spent a year with AmeriCorps as a Site Coordinator for Reading Partners in Baltimore, Maryland. Ian holds a Bachelor of Arts with honors in Music and concentrations in Chemistry and Mathematical Methods from Bates College in Lewiston, Maine.  

Electronic Patient-Reported Outcomes in Chronic Obstructive Pulmonary Disease

A manuscript co-authored by Chris Evans and Brooke Witherspoon reports on the preferences for use and design of electronic patient-reported outcomes in COPD. The results were recently published:   Dumais KM, Dias N, Khurana L, Gary ST, Witherspoon B, Evans CJ, Dallabrida SM. Preferences for use and design of electronic patient‑reported outcomes in patients with chronic obstructive pulmonary disease. Patient (2019).

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Flora Chang as a new research associate to our Long Beach office:

Flora is responsible for collecting, coding and analyzing patient-level data for the development and validation of patient, clinician or observer reported outcomes. Prior to joining Endpoint Outcomes, Flora interned at Alacrita Consulting in London and at Keratin Biosciences in North Carolina. Additionally, Flora worked at Wake Forest Baptist Medical Center in a stress reduction clinical study for patients with migraines. Flora holds a Bachelor of Arts degree in Psychology from Wake Forest University.

Welcome to Endpoint Outcomes

Endpoint Outcomes is pleased to welcome Adriana Estrada as a new research coordinator to our Long Beach office:

Adriana is responsible for coordinating patient recruitment activities across all studies, including liaising with patients and physicians to manage consent, screening, enrollment and other related activities. She is also responsible for managing IRB submissions and approvals across all studies. Additionally, Adriana supports other project and research related activities, such as quality checking documents. Adriana has undergraduate research experience in health disparities among Latinos. Adriana holds a Bachelor of Science in Public Health from University of California, San Diego.