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Patient-Focused Research Participation for Duchenne Muscular Dystrophy

Examples

This project aims to involve patients directly in research activities for Duchenne Muscular Dystrophy, ensuring their voices are heard in the research process.

Description

Patient involvement in research is crucial. This project seeks to facilitate patient participation in Duchenne Muscular Dystrophy research. The Duchenne Research Alliance supports patient involvement in research. Dr. Jennifer Smith, an expert in patient-centered research, leads this project. 

Objectives

Enhance patient participation in research for Duchenne Muscular Dystrophy
  • Develop participation guidelines
  • Recruit patient participants
  • Conduct patient-centered research

Project scope

  • Guideline development
  • Patient recruitment
  • Research activities
  • Long-term follow-up studies

Method

  • Research Methods:Patient surveys and focus groups
  • Patient Engagement:Direct involvement in research planning
  • Data Collection & Analysis:Analysis of patient feedback and research data

Metrics

High levels of patient participation and satisfaction
  • Number of participants
  • Participant feedback

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