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October 21, 2011

October 21, 2011. Consortium Web Update. Freedom Baird, MS Patroula Smpokou, MD. New Content This Year. PKU Toolkit for Teens. PKU Toolkit for Teens. PKU Toolkit for Teens. New Content This Year. Readership Over the Past Year. Most Common Search Keywords. Where Our Readers Are From.

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October 21, 2011

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

  2. New Content This Year

  3. PKU Toolkit for Teens

  4. PKU Toolkit for Teens

  5. PKU Toolkit for Teens

  6. New Content This Year

  7. Readership Over the Past Year

  8. Most Common Search Keywords

  9. Where Our Readers Are From

  10. What They’re Reading

  11. How Readers Arrive

  12. Why were we popular on June 10th?

  13. Revised Acute Illness Protocols

  14. Acute Illness Protocols Pageviews Pages Pageviews Acute Illness Protocols 1,739 Propionic Acidemia 829 Methylmalonic Acidemia 657 VLCADD 525 MSUD 515 Neonate with Hyperammonemia 491 MCADD 447 Organic Acid Disorders 436 OTC Deficiency 425 Fatty Acid Oxidation Disorders 338

  15. 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. 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. 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. Acute Illness Protocols - Acknowledgements • Dr. Susan Waisbren • Dr. Harvey Levy • Dr. Jonathan Picker • Freedom Baird, MS

  19. Transition Toolkit

  20. Maternal PKU & Pregnancy Guide

  21. New Graphics in the Maternal PKU Guide

  22. Maternal PKU & Pregnancy Pageviews Pages Pageviews PKU Recipes 546 Maternal PKU & Pregnancy 430 Maternal PKU Research Study 154 PKU Nutrition 103 Healthy PKU Pregnancy 99 “What Can I Eat?” 96 About Maternal PKU 80 Wheat Starch Dough 80 Newborn Baby’s Health 70 PKU Diet & Formula 68 PKU and Genetics 67 PKU Diet Resources 64

  23. PKU Recipes are Popular

  24. 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. 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

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