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Informal Science

citizen science

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Beverley Smith Beverley Smith 50 Points

Citizen science- Your students may be interested that there are ways ordinary people acan be scientists. Because of the Internet it is possible to advance medical research from your own home.  With rare diseases and incurable conditions especially, there is new medical trend to consider not just clinical research studies but natural history, patient lived experience. The Internet enables  finding such patients easily, and the survey idea permits detailed anonymous reporting of what the condition feels like and how it affects life. Such surveys may hold rich potential for researchers to see patterns, notice things they had not realized and then do clinical studies for better treatments, even cures. The technology is being used for  Parkinson's Disease patients in the US, and for covid patients around the world. I am associated with the patient designed website for the rare movement disorder dystonia. It is such fun to see the 5003 page views so far, from 49 countries, to have the 702 surveys done so far, and to know that we around the world, ordinary people. are trying to advance science The site has pages outlining history of the condition, resources and interesting facts so patients too can know some of what is known so far. It will be online till May 2021. www.dystoniasurveys.org

 

 

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