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ACTION Library Library Action DMD

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Education & Training

ACTION Library

Library

Heart Failure

VADs

MD

Fontan
Other

Muscular Dystrophy

1. Dystrophinopathies (Duchenne, Becker, & Carriers)

PROJECT SUMMARY / CHARTER / KDDs

MD Project Summary
Download

Muscular Dystrophy Registry Project Summary

Dystrophinopathy Project Charter
Download

Muscular Dystrophy Project Charter

DATA ENTRY LINKS

Muscular Dystrophy Project (Baseline data collection)
    1. REDCap link for enrollment of patients for baseline data collection
    2. Select the “ACTION MD” project after logging in

INTERVENTIONS/TOOLS

Muscular Dystrophy - An Introduction to Heart Failure
Download

MD – An Introduction to Heart Failure

Common Medicines for Muscular Dystrophy
Download

MD Common Medicines

Muscular Dystrophy Progression Tracker
Download

MD Progression Tracker

VIDEOS

Understanding Heart Failure in Muscular Dystrophy

Examining Heart Function in Muscular Dystrophy

Library

Data Entry

Bedside Tools

Protocols

Infographics

Brand Tools

Data Entry

VAD PATIENTS

ACTION Simplified Clinical Registry

PROJECTS

ABCD’s of Reducing Stroke

  1. All VAD patient data should be entered into Simplified Clinical.  (Additional QI REDCap coming soon.) 

Discharge & De-escalation for VAD Patients

    1. REDCap Link 
    2. VAD Patients should also be entered into the ACTION Simplified Clinical Registry
    3. See the  Discharge FAQ for additional data entry guidance.

Medications Titration (Telehealth) Improvement Project

  1. REDCap Link: None at this time, data collection ceased February 2021.

Heart Failure Project (Discharge Plan & Communication Checklist)

See Heart Failure Data Entry infographic for more information.

  1. REDCap link for Prospective HF patients (Enrollment of HF patients)
  2. Use of the daily rounding communication checklist tool will be captured by scanning a QR code each day the checklist is used to track the frequency of use.
  3. Teams are responsible for uploading a copy of the patient’s Discharge Summary into the prospective enrollment REDCap. Teams should also complete the  Discharge Plan for each patient, and if they do not fill out the electronic version of the Discharge Plan, they should also upload a copy of the Discharge Plan to the enrollment REDCap.
    • The ACTION DCC will have a CRC pull the data from the uploaded plans and enter it into REDCap for teams (to reduce data entry burden).
  4. Data will also be linked with PHIS to reduce data entry burden.
Fontan Referral Tracking Project (Baseline data collection)
  1. REDCap link for baseline data collection for Fontan Referrals
Duchenne’s Muscular Dystrophy Project (Baseline data collection)
  1. REDCap link for enrollment of DMD patients for baseline data collection
  2. Select the “ACTION DMD” project after logging in
CardioMEMS Registry (Baseline data collection)
  1. REDCap for enrollment of CardioMEMS patients for baseline data collection
  2. Select the “ACTION CardioMEMS” project after logging in
Patient Reported Outcomes (Baseline data collection)
  1. See  Enrolling Patients in Tonic Platform 

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© 2024 Advanced Cardiac Therapies Improving Outcomes Network
© 2024 Advanced Cardiac Therapies
Improving Outcomes Network