Global MPN Patient Survey

Global MPN Patient Survey

1. Aims

   • Primary
     • Document the needs of the global MPN patient comminity
     • Understand differentces between different groups
       • Regions
       • Countries
       • Genders
       • Age Groups
   • Secondary
     • Engage patient community
     • Promote MPNAN
     • Demonstate Access Inequality

2. Deliverables

3. Resources

   • SC
   • Dr Community
   • Will we need outside professional Input ?
     • Not immediately
   • MPNAN members

4. Costs

5. Methodology

   • Validate Aims
     • Who should validate our aims?
       • SC?
       • Doctors?
         • Euro, UK, US, Canada, Asia-Pacific
       • Members?
       • Leukaemia Care
       • Pharma
       • Researchers
       • must minimise overlap with previous studies
     • Are there Precedents for this type of project ?
       • Within LePAF?
         • Ask Jan Geissler
       • Other patient groups ?
   • Write Questions
     • MPN Global Patient Needs Survey
     • Validate
     • Translate
       • Validate in each language
     • Sections
       • Demographic Info
         • Location
         • Gender
         • Age
         • Condition
         • Date of Dx
       • Needs
       • ...
     • Think of the answer you want
     • 100 max
       • 20-30 min completion time
   • Rollout
     • Receive Data
     • Store Data
       • How?
       • Where?
     • Pilot
       • Aim for presentation of pilot results in MPNHZ 2017
   • Analysis
     • Write Report
   • Publish
   • Plan / Manage
     • Create project plan
       • Validate
     • Manage
       • Track progress
       • Risks
       • Issues
   • Write Aims
     • see Aims section in green
   • Regulation
     • any approvals required?

6. Timeframe

7. Challenges

   • Languages
     • What language(s) are the highest priority?
   • Ensure Statistical Value
   • Data Protection
     • Should patient responses be anonymous?
       • Yes - will avoid data protection issues