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Surveys and polls
#ECRDBerlin
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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
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Online communities for research
•Enable patient to express themself
•Document collective voice
•Advocacy tool
•Research answers frequently appearing questions on community
#ECRDBerlin
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Patient groups driving research
• EURORDIS Care Surveys
#ECRDBerlin
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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
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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
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atypical HUSPoll to help patient groups find out how to serve members. For 50% of respondents, it was first time participating in research.
aHUS Results
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•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
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www.facebook.com/rareconnect
[email protected]@rareconnect
www.youtube.com/user/eurordis
Danke.
Here we are:
www www.rareconnect.org