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.
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.
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.
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
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.
- The contributions to instrument scoring from the fields of psychophysics, intelligence testing, scaling, attitude measurement, and classical and modern test theories
- The use of scoring approaches in medical research and a brief introduction into the mathematics that constitute scoring
- Potential consequences of different approaches to scoring
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.
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.
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)”.
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.
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). https://doi.org/10.1007/s40271-019-00376-9.