Susan Waisbren, PhD, Director
Harvey Levy, MD, Senior Physician in Medicine
Freedom Baird, MS, Web Manager
Vera Anastasoaie, BA, Administrator
Nov 14, 2014
Here are the highlights of new content and services the Consortium has offered online and in print this past year –
Moving On with Mito: A Guide for Teens and Young Adults Living with Mitochondrial Disorders
This comprehensive, 28-page guide offers sections on understanding the biological basics of mitochondrial disorders, achieving life goals including going to college, working, and living independently, and transitioning to adult health care. The guide was authored by Rob Auffrey, MA, Emerson College with supervision by Susan Waisbren, PhD, Boston Children’s Hospital, Harvard Medical School, and Tim Edgar, PhD, Graduate Program Director for Health Communications at Emerson College. The guide was developed in collaboration with the Metabolism Program at Boston Children’s Hospital, GEMSS for Schools, and the New England Genetics Collaborative, and with input from Mito Action, Next Step, the United Mitochondrial Disease Foundation, and especially from young adults living with mitochondrial disorders sharing their perspectives, insights, and suggestions.
WPS 65th Anniversary Unlocking Potential Award
In February 2014 we were very happy to learn that Western Psychological Services chose Boston Children’s Hospital, Division of Genetics, Metabolism Program as one of the winners in the Research category of the WPS 65th Anniversary Unlocking Potential Awards! The award recognizes Dr. Susan Waisbren and the metabolism team at Boston Children’s Hospital for making the ABAS-II psychological assessments available online and for demonstrating their efficacy as a universal screening, follow-up, and research instrument for patients with in-born metabolic conditions.
ABAS-II Online Assessments Ported into REDCap
After last year’s successful pilot of the online ABAS-II assessments using the PsychData survey development platform, we made the decision to port the assessments to REDCap, for ease of use and cost savings. Neuropsychologists and study coordinators of the Urea Cycle Disorders Consortium, and staff members of the Cranio-Facial Clinic and the Department of Plastic and Oral Surgery at Boston Children’s Hospital have been using the new REDCap versions of these assessments. A requested feature we added is allowing the rater to complete part of a lengthy survey, save it, and return to finish it at a later date.
Educator’s Guide to Urea Cycle Disorders is Now Online
We ported our popular Educator’s Guide to Urea Cycle Disorders from the print-ready version to a web version. The guide is designed for teachers, nurses and parents of students with UCDs to enable better communication around students’ health and academic needs. To date the online version has been viewed 412 times, is one of our top 25 most visited online guides, and is viewed for an average of 4 minutes per visit, indicating that readers are accessing the guide in-depth.
Consortium Web Site Readership
Over the past year we had 30,832 visitors viewing 76,990 pages of content on the Consortium web site. Readers also downloaded PDF versions of our online guides 2,127 times. Our readers are from 5,657 cities in 159 countries, with New York, London, Boston, Sydney and Riyadh yielding the most readers. 46% are female, 54% are male, according to Google analytics, and most are under the age of 44. The chart at right shows the age demographics of our readers.
Most Popular Content
Our most widely read pages continue to be:
The top 20 keywords/phrases that brought readers to the web site are: pku, urea cycle, pku recipes, new england consortium, pku diet, new england consortium of metabolic programs, galactosemia in adults, galactosemia symptoms in adults, new england consortium metabolic, pku and pregnancy, phenylketonuria, scadd, newborn screening, methylmalonic acidemia, pku recipes for adults, ornithine transcarbamylase deficiency, lchadd, metabolic disorders in infants, new england metabolic consortium, phenylketonuria diet.
We continued to get requests from health care providers and students around the world to use text and illustrations from the Consortium web sites resources. Requests this past year have come from:
- Temple Street Children’s University Hospital, Dublin Ireland
- The University of Newcastle, NSW, Australia
- Health Education West Midlands, Birmingham, UK
- Cardinal Glennon Children’s Medical Center, St Louis, MO
- SOARD (Surgery for Obesity and Related Diseases) the Journal of the American Society for Metabolic and Bariatric Surgery
- University of Hong Kong, School of Professional and Continuing Education