Global MPN Patient Survey

1. Document the needs of the global MPN patient comminity
2. Understand differentces between different groups
   1. Regions
   2. Countries
   3. Genders
   4. Age Groups

1. Engage patient community
2. Promote MPNAN
3. Demonstate Access Inequality

1. Not immediately

1. Who should validate our aims?
   1. SC?
   2. Doctors?
      1. Euro, UK, US, Canada, Asia-Pacific
   3. Members?
   4. Leukaemia Care
   5. Pharma
   6. Researchers
   7. must minimise overlap with previous studies
2. Are there Precedents for this type of project ?
   1. Within LePAF?
      1. Ask Jan Geissler
   2. Other patient groups ?

Anlagen:

• MPN Global Patient Needs Survey

1. Validate
2. Translate
   1. Validate in each language
3. Sections
   1. Demographic Info
      1. Location
      2. Gender
      3. Age
      4. Condition
      5. Date of Dx
   2. Needs
   3. ...
4. Think of the answer you want
5. 100 max
   1. 20-30 min completion time

1. Receive Data
2. Store Data
   1. How?
   2. Where?
3. Pilot
   1. Aim for presentation of pilot results in MPNHZ 2017

1. Write Report

1. Create project plan
   1. Validate
2. Manage
   1. Track progress
   2. Risks
   3. Issues

1. see Aims section in green

1. any approvals required?

1. What language(s) are the highest priority?

1. Should patient responses be anonymous?
   1. Yes - will avoid data protection issues