Patient Driven Clinical Sharing

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patient ownership of clinical research data @wilbanks [email protected]

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Transcript of Patient Driven Clinical Sharing

Page 1: Patient Driven Clinical Sharing

patient ownership of clinical research data

@[email protected]

mailto:[email protected]
mailto:[email protected]
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1. what do you mean by clinical? research?

data?

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1. what do you mean by clinical? research?

data?

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1. what do you mean by clinical? research?

data?

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2. we’re not very patient.

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http://opensnp.org/users/615

http://opensnp.org/users/615
http://opensnp.org/users/615
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http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html

http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
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“Also there is no suggestion of consanguinity in your pedigree.”

http://www.ianlogan.co.uk/

http://www.ianlogan.co.uk
http://www.ianlogan.co.uk
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https://www.scienceexchange.com/

https://www.scienceexchange.com
https://www.scienceexchange.com
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3. principles for sharing.

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honesty. reusability. portability.

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http://synapse.sagebase.org

http://synapse.sagebase.org
http://synapse.sagebase.org
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http://weconsent.us

http://weconsent.us
http://weconsent.us
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http://sagebridge.org

http://sagebridge.org
http://sagebridge.org
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if we scale...

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honesty, reusability, and portability will change a clinical

outcome.

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thank you


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