1
Surveys and polls
#ECRDBerlin
2
Quantitative data needed for rare diseases
•Policy makers: i.e. drug access, must be scientific
publication
•Interventio...
3
Online communities for research
•Enable patient to express themself
•Document collective voice
•Advocacy tool
•Research ...
4
Patient groups driving research
• EURORDIS Care Surveys
#ECRDBerlin
5
Experience of people living with Behcet’s
• Moderators and patient group partners contributed
questions, edits of draft ...
6
http://bit.ly/BehcetPollResults
7
http://bit.ly/BehcetPoll
• Translated to 6 languages,
including Chinese
• Over 5k page views
• Shared widely on social m...
8
atypical HUS
Poll to help patient groups find out how to serve members. For 50% of
respondents, it was first time partic...
9
•Involve and consult medical experts
•Translate and parallel design of poll
•Involve members of your network in
promotio...
10
www.facebook.com/rareconnect
team@rareconnect.org@rareconnect
www.youtube.com/user/eurordis
Danke.
Here we are:
www www...
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Surveys and polls: The RareConnect.org Experience

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Surveys and polls: The RareConnect.org Experience

  1. 1. 1 Surveys and polls #ECRDBerlin
  2. 2. 2 Quantitative data needed for rare diseases •Policy makers: i.e. drug access, must be scientific publication •Interventions and treatments to be targeted to unique manifestations of disease •To help understand delay in diagnosis, misdiagnosis •Doctors #ECRDBerlin
  3. 3. 3 Online communities for research •Enable patient to express themself •Document collective voice •Advocacy tool •Research answers frequently appearing questions on community #ECRDBerlin
  4. 4. 4 Patient groups driving research • EURORDIS Care Surveys #ECRDBerlin
  5. 5. 5 Experience of people living with Behcet’s • Moderators and patient group partners contributed questions, edits of draft poll, and ideas for outcomes we were looking to highlight. • Final 18 questions checked by Behcet’s specialist. • Poll open for 6 weeks on SurveyMonkey, English only. • Results: 194 responses, 18 countries, infographic, summary. #ECRDBerlin
  6. 6. 6 http://bit.ly/BehcetPollResults
  7. 7. 7 http://bit.ly/BehcetPoll • Translated to 6 languages, including Chinese • Over 5k page views • Shared widely on social media, 10k combined impressions • Next up for Behcet’s groups: creating international alliance
  8. 8. 8 atypical HUS Poll to help patient groups find out how to serve members. For 50% of respondents, it was first time participating in research.
  9. 9. 9 •Involve and consult medical experts •Translate and parallel design of poll •Involve members of your network in promotion •Send results to participants #ECRDBerlin Key lessons
  10. 10. 10 www.facebook.com/rareconnect team@rareconnect.org@rareconnect www.youtube.com/user/eurordis Danke. Here we are: www www.rareconnect.org

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