Improving Seizure Outcomes Through Online Seizure Diaries
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1 Improving Seizure Outcomes Through Online Seizure Diaries Dravet Syndrome Foundation Family and Professional Conference June 28, 2014 Robert Moss Co-Founder of SeizureTracker.com Father to Evan who lives with TSC 1
2 Evan s Early Years Normal Pregnancy Healthy Baby Loving Family Picture Perfect! During Evan s first month of life, his seizures began.
3 Diagnosis Seizures Tuberous Sclerosis Complex Brain Tumors Kidney Tumors
4 Battling Epilepsy 9 meds Trileptal Keppra Lamictal Dilantin Sabril Depakote Zonegran Topamax Klonopin More Tests More Meds More Seizures Evan s personality began to dull.
5 Brain Surgery Seizures Per month We knew we made the right choice.
6 Seizure-Free Walk Stand Crawl Climb Stairs Run Ride a Bike Initially physical therapy was three days a week.
7 10 Months after Brain Surgery!
8 2013 SeizureTracker.om
9 Mission: Dedicated to providing patients and doctors with free comprehensive tools to help understand the relationship between seizure activity and anti-epileptic treatments. Empowering patients to take a more active role in their own health care SeizureTracker.com
10 Mission: Dedicated to providing patients and doctors with free comprehensive tools to help understand the relationship between seizure activity and anti-epileptic treatments. Empowering patients to take a more active role in their own health care SeizureTracker.com
11 Free Online 17,000+ Global Users 250+ New Monthly 670,000+ Events Logged Events Daily 35,000+ Medication Entries 2013 SeizureTracker.com
12 Patient Empowerment Portable Patient Data Multiple Access Points Highlights Treatment Options Terminology 2013 SeizureTracker.com 12
13 Control Panel Calendar Navigation Click on Dates to Log Events Red = Seizure Events Yellow = Appointments Profile Information Update Medications Other Treatments (VNS, Diet) Contact Manager 2013 SeizureTracker.com
14 Daily Logging Page Active Medications Event Time, Length and Type Add YouTube Link to Event Calendar Navigation Appointment Tracker Medication Blood Levels Menstrual Cycle Glucose Levels Ketone Levels Daily Notes VNS Magnet Swipe Rescue Medications Daily Variables 2013 SeizureTracker.com
15 2013 SeizureTracker.com
16 2013 SeizureTracker.com
17 Event Data Standardization Seizure Event Triggers Description Post Event Limited Customization Note Sections for Text Remembers Last Event Values 2013 SeizureTracker.com
18 2013 SeizureTracker.com
19 2013 SeizureTracker.com
20 2013 SeizureTracker.com
21 2013 SeizureTracker.com
22 2013 SeizureTracker.com
23 Daily Event List Shows Daily Seizure Events Edit /Delete Events List By Time Video Indicator/Link 2013 SeizureTracker.com
24 YouTube Video Integration Pop-up Window View Seizure Event Videos Link to Video on Event List Includes Date and Length Aids More Effective Diagnosis 2013 SeizureTracker.com
25 Printable Logs Mobile Options Paper Logs Mirror Website Mobile Optimized Increased Access Team Logging 2013 SeizureTracker.com 25
26 8.5in. x 11in. Binder Seizure Log School IEP Daycare Home This form allows for several seizures to be logged on one page and is formatted to fit in a 3-ring binder. SeizureTracker.com
27 iphone / itouch / ipad APP 2013 SeizureTracker.com Features Real Time Seizure Event Logging Video Capture Graphs Log Offline Sync At Your Convenience
28 2013 SeizureTracker.com
29 2013 SeizureTracker.com
30 Improves Communication More Accurate Data Easily Share Concise Reports Provides Discussion Points Valet System Access 2013 SeizureTracker.com
31 Report Options Length Anonymized Graphs Entire Medication List VNS Schedule Up To 8 Sections 2013 SeizureTracker.com
32 Seizure Tracker Reports Profile Information Seizure Counts By Month/Week or Print Reports Multiple Graph Types Customizable Include All Textual Data Video Icon Links to Video Player Medication / Treatment History Flagged Seizure Activity 2013 SeizureTracker.com
33 Valet Management System Manage Multiple User Accounts Access Level Choices Invites 2012 SeizureTracker.com
34 Valet Management System Access Level Selections Access level setting include: - Log Seizure Events - Medication Schedule - Rescue Medication Schedule - Diet History (Glucose and Ketones) - Vagus Nerve Stimulator History - Log Menstrual Cycle Information - Log Medication Blood Levels - Log Daily Variables - Log Daily Notes - Log Daily Appointments - Contact Information - Account Settings - Edit Password/ - Valet System - Update Weight - Create Reports - Reports User/Patient Initiated 2013 SeizureTracker.com
35 Valet Management System Navigation Valet Key User List Management Bar 2012 SeizureTracker.com
36 Improving Outcomes Seizure Severity vs. Count Compares Treatments Illustrates Trends Longitudinal Reference Highlights Treatment Options 2012 SeizureTracker.com
37 Report Graphing Options Compare: Seizure Count/Type Medication Dosages Surrounding Treatments Possible Triggers Seizure Events By Time of Day Blood Levels Menstrual Cycle 2013 SeizureTracker.com
38 Report Graphing Options (Continued) Compare: Diet Changes Daily Variables 2013 SeizureTracker.com
39 Privacy and HIPAA Confidentiality - Security Focus - User Initiated Data Sharing - Private Servers/Database Data Integrity - Continual System Evaluation - Daily Data Backup - Real time user data review Data Accessibility - Data Import/Export Initiative - Web and Mobile Interface - Online Management System 2013 SeizureTracker.com
40 Empowerment Patient Care Providers Clinicians - Improves Communication - More Accurate Data - Standardization - Portability/Access - Longitudinal Evaluation Tools - Improves Outcomes
41 Thank You! In The Pipeline Medication History Modifications -Generic Tracking: Manufacturer and Lot Numbers -Dosing Time Logging Multi-Language Support -Across all tools -Web-based validated volunteer translation system Contact: Robert Moss Ph
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