Shayna Egan, Martha Gauthier, Aisling Ryan and Mary Lynn Cala will be presenting two posters at the 23rd Annual ISPOR meeting in Baltimore in May. Both posters highlight methodological work we have been conducting in hopes of contributing to advancements in the field of clinical outcomes assessment research. The topics include:
- Do words matter? Patient perspectives on conceptually similar concepts
- Patient definitions of improvement across four disease areas
More information about the posters will be included on the Publications section of the website following the conference in May.
Endpoint Outcomes is pleased to welcome Michelle Borges to our office in Boston as a senior research coordinator. Prior to joining Endpoint Outcomes, Michelle worked as a Research Technician at Boston Medical Center on a clinical trial testing the effectiveness of delivering diabetes self-management education using virtual world technology versus a face-to-face medical group visit format. Michelle also has research experience on studies identifying methods to advance transitional care services for patients and caregivers, reduce hospital readmission rates among patients with depression, and feasibility testing of a cognitive behavioral therapy intervention delivered by relational agent technology. Michelle holds a Bachelor of Science degree in Biological Anthropology and a Bachelor of Arts degree in Spanish from the Pennsylvania State University and a Master of Arts in Medical Anthropology and Cross Cultural Practice from Boston University School of Medicine.
A recent publication co-authored by Nathan Johnson, Zoe Kopp, Shayna Egan and Chris Evans details our international collaboration to find a potential replacement for burdensome daily diaries in overactive bladder trials: Kelleher C, Chapple C, Johnson N, Payne C, Homma Y, Hakimi Z, Siddiqui E, Evans C, Egan S, Kopp Z. Development of an overactive bladder assessment tool (BAT): a potential improvement to the standard bladder diary. Neurology and Urodynamics 2018; 1-10.
2017 was a busy year for Endpoint Outcomes. We continued our extensive instrument development activities to support sponsors in developing labeling claims with COAs. We cruised through our 2,500th patient interview and are well on our way to our 3,000th interview. One of the most rewarding aspects to our work in 2017 was our research in rare/orphan diseases where we hear directly from patients and their caregivers on the major impacts that their diseases have on their daily lives. We have also been active in innovative psychometric research and continue to expand our work in consensus generating techniques through Delphi panels to develop consensus recommendations and screening tools. Finally, it was our pleasure to work with Grace Cares and Project Hearts to help improve public health in the Dominican Republic.
Moving forward in 2018 we are looking at expanding our operations in Boston again and building up our psychometric team under the leadership of Dave Andrae. We look forward to seeing everyone at ISPOR, ISOQOL and C-Path in 2018.
Nathan Johnson, Chris Evans and Aisling Ryan continue their work with their colleagues to advance the Living with Idiopathic Pulmonary Fibrosis (L-IPF) tool through the FDA’s qualification process. The most recent results of that research were presented as an Encore presentation at the Pulmonary Fibrosis Foundation Summit in Nashville on November 9, 2017.
Steve Hwang, Chris Evans and co-presenters will be presenting a poster at the American College of Neuropsychopharmacology Annual Meeting in December. This poster details Endpoint Outcomes’ multi-year effort to develop and validate an observer-reported diary of impulsive aggression in attention deficit hyperactivity disorder. This diary will be used as a primary endpoint for registration in the US.
A recent open access publication co-authored by Chris Evans details the multi-year effort to develop and validate the Dysphagia Symptom Questionnaire (DSQ) to support labeling claims in accordance with FDA guidelines: Hudgens, S, Evans C, Philips E, Hill M. Psychometric validation of the Dysphagia Symptom Questionnaire in patients with eosinophilic esophagitis treated with budesonide oral suspension. Journal of Patient Reported Outcomes (2017) 1:3 DOI 10.1186/s41687-017-0006-5.
Brooke Witherspoon, Martha Gauthier and Chris Evans will be presenting the results of their study to develop a measure of signs, symptoms and impacts of tardive dyskinesia in patients with schizophrenia at the 30th Annual Psych Congress in New Orleans (September 16-19, 2017).
Endpoint Outcomes is pleased to welcome Maggie Paulich to our office in Boston as a research associate. Maggie is a recent graduate of Bates College with a bachelor’s degree in psychology. She was also a research assistant at the University of Washington Stress Development Lab where she assisted with patient recruitment and patient interview data entry for studies that examined the influence of stress on children’s social, emotional and brain development.
Endpoint Outcomes has recently published a qualitative study that examined the concepts important for incorporation into a daily diary of cataplexy frequency and the content validity of the Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD).