Peter Zdziarski: Making Rare Disease Research More Human
Peter Zdziarski, Founder and Marketing Director of Glanzmann Thrombasthenia Advocacy Network, shared a post on LinkedIn:
”I’ve been thinking a lot about surveys in the Glanzmann Thrombasthenia and rare disease community.
I understand how important they are for research and progress, but I also think they need to be rethought.
I do not pretend to be an expert on this topic, but I do know the road of endless surveys that seem to constantly come our way as patients and families.
I honestly think a big issue is not just the small patient population, but survey fatigue and boredom.
I think participation needs to be more interactive and fit naturally into everyday life, rather than feeling like homework.
The easier and more human the experience feels, the more likely people are to engage consistently and provide meaningful information.”
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