October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD
newenglandconsortium.org New Content This Year
newenglandconsortium.org PKU Toolkit for Teens
newenglandconsortium.org PKU Toolkit for Teens
newenglandconsortium.org PKU Toolkit for Teens
newenglandconsortium.org New Content This Year
newenglandconsortium.org Readership Over the Past Year
newenglandconsortium.org Most Common Search Keywords
newenglandconsortium.org Where Our Readers Are From
newenglandconsortium.org What They’re Reading
newenglandconsortium.org How Readers Arrive
newenglandconsortium.org Why were we popular on June 10 th ?
newenglandconsortium.org Revised Acute Illness Protocols
newenglandconsortium.org Acute Illness Protocols Pageviews PagesPageviews Acute Illness Protocols1,739 Propionic Acidemia829 Methylmalonic Acidemia657 VLCADD525 MSUD515 Neonate with Hyperammonemia491 MCADD447 Organic Acid Disorders436 OTC Deficiency425 Fatty Acid Oxidation Disorders338
newenglandconsortium.org Acute Illness Protocols - Goals Users/audience –ED physicians –Hospitalists –Intensivists –Pediatricians Setting of care –ED, Floor, ICU Setting of illness –Acute metabolic decompensation Patient population –Patients w/ known metabolic disorders
newenglandconsortium.org Acute Illness Protocols - Goals Basic information about each disorder –Limited details –Tailored for primary care physician, NOT geneticist Important aspects of management –Knowledge –Application (w/ help of metabolic geneticist) Crucial complications –Specific to each disorder –When to suspect what –What to do
newenglandconsortium.org Acute Illness Protocols - Tasks Update –Current practice (management guidelines, therapies) –Current literature (evidence) Revision –Practicality –Applicability –Ease of read (bullets, graphs) –Structure –Consistent composition
newenglandconsortium.org Acute Illness Protocols - Acknowledgements Dr. Susan Waisbren Dr. Harvey Levy Dr. Jonathan Picker Freedom Baird, MS
newenglandconsortium.org Transition Toolkit
newenglandconsortium.org Maternal PKU & Pregnancy Guide
newenglandconsortium.org New Graphics in the Maternal PKU Guide
newenglandconsortium.org Maternal PKU & Pregnancy Pageviews PagesPageviews PKU Recipes546 Maternal PKU & Pregnancy430 Maternal PKU Research Study154 PKU Nutrition103 Healthy PKU Pregnancy99 “What Can I Eat?”96 About Maternal PKU80 Wheat Starch Dough80 Newborn Baby’s Health70 PKU Diet & Formula68 PKU and Genetics67 PKU Diet Resources64
newenglandconsortium.org PKU Recipes are Popular
newenglandconsortium.org Web Site Goals for the Coming Year Continue Updating Acute Illness Protocols An Educators Guide to MCADD, Jenna Wilson, MA More content by Consortium members, and links to their work and workplaces
newenglandconsortium.org Thank You! Dr. Susan Waisbren - Director, Dr. Harvey Levy – Senior Physician, Dr. Patroula Smpokou, Frances Rohr, Vera Anastasoaie, Stephanie Petranides, Freedom Baird 1 Autumn Street, Room 526 Boston, MA