october 21, 2011 consortium web update freedom baird, ms patroula smpokou, md

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

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

October 21, 2011

Consortium Web Update

Freedom Baird, MSPatroula Smpokou, MD

Page 2: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

New Content This Year

Page 3: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

PKU Toolkit for Teens

Page 4: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

PKU Toolkit for Teens

Page 5: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

PKU Toolkit for Teens

Page 6: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

New Content This Year

Page 7: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Readership Over the Past Year

Page 8: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Most Common Search Keywords

Page 9: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Where Our Readers Are From

Page 10: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

What They’re Reading

Page 11: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

How Readers Arrive

Page 12: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Why were we popular on June 10th?

Page 13: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Revised Acute Illness Protocols

Page 14: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

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

Page 15: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

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

Page 16: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

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

Page 17: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

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

Page 18: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Acute Illness Protocols - Acknowledgements

Dr. Susan Waisbren Dr. Harvey Levy Dr. Jonathan Picker Freedom Baird, MS

Page 19: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Transition Toolkit

Page 20: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

Maternal PKU & Pregnancy Guide

Page 21: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

New Graphics in the Maternal PKU Guide

Page 22: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

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

Page 23: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

newenglandconsortium.org

PKU Recipes are Popular

Page 24: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

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

Page 25: October 21, 2011 Consortium Web Update Freedom Baird, MS Patroula Smpokou, MD

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

[email protected]