1. October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

2. newenglandconsortium.org New Content This Year

3. newenglandconsortium.org PKU Toolkit for Teens

4. newenglandconsortium.org PKU Toolkit for Teens

5. newenglandconsortium.org PKU Toolkit for Teens

6. newenglandconsortium.org New Content This Year

7. newenglandconsortium.org Readership Over the Past Year

8. newenglandconsortium.org Most Common Search Keywords

9. newenglandconsortium.org Where Our Readers Are From

10. newenglandconsortium.org What They’re Reading

11. newenglandconsortium.org How Readers Arrive

12. newenglandconsortium.org Why were we popular on June 10 th ?

13. newenglandconsortium.org Revised Acute Illness Protocols

14. 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

15. 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

16. 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

17. 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

18. newenglandconsortium.org Acute Illness Protocols - Acknowledgements Dr. Susan Waisbren Dr. Harvey Levy Dr. Jonathan Picker Freedom Baird, MS

19. newenglandconsortium.org Transition Toolkit

20. newenglandconsortium.org Maternal PKU & Pregnancy Guide

21. newenglandconsortium.org New Graphics in the Maternal PKU Guide

22. 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

23. newenglandconsortium.org PKU Recipes are Popular

24. 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

25. 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 02115 617-355-7346 freedom.baird@gmail.com