Wikipedia: n ++ made easy Matt Might University of Utah / - - PowerPoint PPT Presentation

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Wikipedia: n ++ made easy Matt Might University of Utah / - - PowerPoint PPT Presentation

Sep 08, 2022 180 likes •721 views

Wikipedia: n ++ made easy Matt Might University of Utah / NGLY1.org matt.might.net What is Wikipedia? What is Wikipedia? Anyone can view. Anyone can edit. Wikipedia is the worlds database. Its what parents and patients search.

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Wikipedia:

“n++ made easy”

Matt Might University of Utah / NGLY1.org matt.might.net

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What is Wikipedia?

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What is Wikipedia?

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Anyone can view.

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Anyone can edit.

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Wikipedia is the world’s database.

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It’s what parents and patients search.

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“M.D. by Wikipedia”

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You do too.

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Why Wikipedia works

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Reaching n=2?

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Edit Wikipedia

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Gene name, rare feature

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“NGLY1” or “alacrima”

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Possible clinical significance

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The Undiagnosed Disease Network has identified a patient presenting with phenotype with a putative causal mutation (c.????, p.????) in gene X. [n] [n] http://undiagnosed.gov/case/1234

Possible clinical significance

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Case description

  • Symptoms/features (HPO and “PPO”)
  • Prior plausible/tentative diagnoses
  • Attempted treatments / therapies
  • Any and all variants of interest
  • Pictures of patient (if possible)
  • UDN contact: Phone, email, web form
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Three pitfalls

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1: More than just English

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(Arabic may be good too.)

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2: Multiple gene names

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“PNGase”

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CDG4

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CDGIV

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“CDG1V”

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3: Don’t fire and forget!

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If n goes to 2?

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Edit Wikipedia!

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Help patients make sites.

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Diagnosis is the start.

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Teach patients SEO.

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Search Engine Optimization

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How does Google rank?

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“ngly1” “ngly1” “alacrima”

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http://foo.com/ngly1

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http://ngly1.net/

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Or, buy AdWords!

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This internet will find them.

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18

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23

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Action items: Wikipedia

  • Do the same for other “pedias”: SNPedia
  • Need short online case descriptions on .gov site.
  • Need easy contact info: email, phone, web form.
  • Need standard template for adding to Wikipedia.
  • Need advice for patients on patient-run sites.