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“Health is not a waffle. You can’t pour syrup into one square and expect it to stay there. Health research is more like spaghetti. If you pour sauce on one noodle, it’s likely to get everywhere” -Robyn Correll Carlyle, MPH, CHWIpic.twitter.com/DkBmdM5cbc
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Now for a panel on expanding your engagement to underserved populations with Dr. Horn (LHC BioSolutions), Linda Wade and Jordan Shumway (
@SickleCellMTF), Khrystal Davis (Texas Rare Alliance), and Robyn Carlyle (@TXCHW1).#DataDIY#RareDiseasepic.twitter.com/RibLMicIDQ
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Have questions for our panel? Ask now: https://datadiy4.cnf.io/sessions/t4y7/#!/dashboard …
#DataDIY#RareDiseasepic.twitter.com/6ZlThcQV3A
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Remember to define your research goals when embarking on a natural history study.
#DataDIY#RareDiseasepic.twitter.com/fJKALBqkmw
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Establishing a primary database with a positive effect of having all protocols listed on http://clincialtrials.gov , allowing researchers and patient families to get in contact with appropriate resources.
#DataDIY#RareDiseasepic.twitter.com/shRx1NRmos
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Our next panel on clinical guidelines for data features Paige Nues of
@rettsyndrome and Dr. Suter and Dr. Glaze of@bcmhouston.#DataDIY#RareDiseasepic.twitter.com/4x22ZvLtUk
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The
@US_FDA is willing to hear the patient voice so don't be afraid to ask for help.#DataDIY#RareDiseasepic.twitter.com/jDr0CaTVva
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@trendcommunity using social listening to listen and observe. Don't just look for answers in the obvious places.#DataDIY#RareDiseasepic.twitter.com/oKVrd3bi27
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We crowdsourced data and we didn’t just publish the results in medical literature but in general media as well.
#DataDIY#RareDiseasepic.twitter.com/6uUcAGoObP
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“If it’s not in the literature then the doctors don’t read about it, researchers don’t know about it and the FDA won’t recognize it.”
#DataDIY#RareDiseasepic.twitter.com/oggcXsq66J
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We’re learning about drug repurposing and crowdsourcing from Dr. Pullen of the Chion Foundation and Maria Picone of
@TRENDcommunity.#DataDIY#RareDiseasepic.twitter.com/XwJ54rUeI3
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Keys to a good partnership framework.
#datadiy#RareDiseasepic.twitter.com/9cZJFeZeIg
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What types of data and platforms are patient organizations using?
#DataDIY#RareDiseasepic.twitter.com/D74jsy2hAX
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Key takeaways from Kristin and
@fastercures.#DataDIY#RareDiseasepic.twitter.com/u9kPFu9XBu
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No one thinks about life cycle at the beginning but that is when you should think about it to determine what ultimate success looks like and to avoid mission creep.
#DataDIY#RareDiseasepic.twitter.com/SyS98aADB8
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Make sure you know what your definition of collaboration is and that everyone agrees before you start.
#DataDIY#RareDiseasepic.twitter.com/w6MqOXtMxZ
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Ever wonder what a consortium does? Now you know.
#DataDIY#RareDiseasepic.twitter.com/qeKBNWFLtj
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In response to consortia-fatigue,
@fastercures put together a consortia-pedia catalogue.#DataDIY#RareDiseasepic.twitter.com/Q1WJqesJYu
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Kristin Schneeman of
@fastercures is sharing how to manage multi-stakeholder collaborations.#DataDIY#RareDiseasepic.twitter.com/sROGxu94LS
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How can we engineer something for patients that acts like GPS to get you to the right doctors, treatments and your final destination of a cure? That’s what
@EBResearch is creating with@AWS#DataDIY#RareDiseasepic.twitter.com/nnzxkWOdFH
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