A manuscript co-authored by Shayna Egan, Ted Wells and Brooke Witherspoon reports on the significant health-related quality burden associated with pyruvate kinase deficiency (PKD). Patient interviews were conducted in the US, the Netherlands and Germany to estimate how hemolytic anemia affects patients’ daily lives. The results were recently published: Grace RF, Cohen J, Egan S, Wells T, Witherspoon B, Ryan A, Salek SS, Bodie S, Klassen RJ. The burden of disease in pyruvate kinase deficiency: patients’ perception of the impact on health-related quality of life. Eur J Haematol 2018; 101(6): 758-765. doi: 10.1111/ejh.13128
A manuscript co-authored by Dave Andrae reports on the significant improvements in HRQOL observed in Irritable Bowel Syndrome with diarrhea when treated with eluxadoline. The results were recently published: Abel, JL, Carson RT, Andrae DA. Qual Life Res (2018). https://doi.org/10.1007/s11136-018-2008-z
The Endpoint Outcomes Long Beach office had their summer outing on Thursday, August 30th and spent the afternoon volunteering at the Ronald McDonald Long Beach House. Ronald McDonald House charities provide a place to stay for families with hospitalized children who are being treated at nearby hospitals and medical facilities. Endpoint Outcomes had a great time making several baked goods for families and their children to enjoy and will also be making an additional donation to assist in purchasing much-needed supplies.
Endpoint Outcomes is pleased to welcome two new Research Associates to our Long Beach office:
Elizabeth Hribal is a recent graduate of Occidental College where she received a BA in Cognitive Sciences with a minor in Neurosciences. Her previous work experience included project management work at Atara Biotherapeutics, an internship at Kythera Biopharmaceuticals and volunteer activities at the Westlake Village Surgical Center. Elizabeth was also a volunteer with Global Medical Brigades in Tegucigalapa, Honduras where she helped to set up a mobile health clinic.
Christopher Byrd is a recent graduate of California Polytechnic State University where he received a BA in Sociology with a minor in Global Politics. His previous work experience included an internship at Restorative Partners a non-profit organization that serves people impacted by crime and as a homeless service worker at the Community Action Partnership SLO. Chris was also a Computational Chemistry Researcher in the Cal Poly Chemistry department and studied abroad in Jordan.
In 2018, researchers at Endpoint Outcomes embarked on an exercise to develop illustrations to assist pediatric research participants in communicating their disease experience to our interviewers. A list of concepts commonly found in pediatric diseases was developed based on a review of generic pediatric health-related quality of life measures. Draft illustrations were initially developed by a professional illustrator to reflect the core concepts. The draft illustrations were then reviewed by staff at Endpoint Outcomes to ensure they reflect the relevant concepts and illustrations were subsequently altered if necessary. The illustrations have been developed to be gender and ethnicity/race neutral and to focus on disease deficits. Currently, the illustrations are being pilot tested in two pediatric studies in rare diseases. A formal evaluation of the content validity of the measures is planned for later in the year. For additional information on this work please contact Shayna Egan: Shayna.firstname.lastname@example.org
Development of screening tool for uterine fibroids being presented at the American Society for Reproductive Medicine
Nathan Johnson and Caitlin Pohl are co-presenters of an upcoming poster presentation at the American Society for Reproductive Medicine (ASRM; Denver, CO; October 6-10-, 2018). The presentation is about a novel screening tool for women with symptomatic uterine fibroids that was developed using a modified Delphi Panel process. The other co-authors are affiliated with Allergan, the University of Michigan Medical School, Baylor University Medical Center, University of California – San Francisco, Carolina Women’s Research and Wellness Center, Wayne State University School of Medicine and Johns Hopkins University School of Medicine.
Novel migraine-specific PRO being presented at the Migraine Trust International Symposium and the European Headache Federation
Mary Lynn Cala, Nicole Lyn, Christina Graham and Chris Evans are co-presenters of a poster presentation at the Migraine Trust International Symposium (MTIS; London, UK; September 6-9, 2018) and an e-poster presentation at the European Headache Federation (EHF; Florence, Italy; September 28-30, 2018). Both presentations are about a novel migraine-specific PRO measure to assess functioning based on activity impairment related to migraine in episodic and chronic migraine patients. The other co-authors are affiliated with Allergan, Albert Einstein College of Medicine and the Mayo Clinic.
A manuscript co-authored by Shayna Egan, Aisling Ryan, Ted Wells and Brooke Witherspoon was recently accepted by the European Journal of Haematology. The article titled, The Burden of Disease in Pyruvate Kinase Deficiency: Patients’ Perception of the Impact on Health-Related Quality of Life, is currently available in Epub ahead of print.
A recent publication co-authored by Aisling Ryan, Ted Wells and Chris Evans discusses the development of a conceptual model of symptoms and impacts in neuropathic pain in the US and Japan: Hwang S, van Nooten F, Wells T, Ryan A, Crawford B, Evans C, English M. Neuropathic pain: a patient-entered approach to measuring outcomes. Health Expectations 2018;1-13.