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How to start a DNA Library to support Vitiligo research

Posted by Jeff on June 28, 2010 at 7:51am

Ask yourselves.... how much progress could be made in Vitiligo research if scientist shared the DNA samples that they have taken from Vitiligo Patients? 

 

Take it one-step further...How many people with Vitiligo would gladly pay a nominal fee to ship their DNA to a testing facility?

 

I want to start a free DNA library to support Vitiligo research, can it be done?  What challenges do we face? 

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Tags: DNA, Library, Vitiligo, a, cure, find, research
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Replies

  • Jeff June 30, 2010 at 5:50am
    Rakhavan – I didn’t take it negative at all, those are actually the things I want folks to consider. Step one would definitely be to set up a non-profit, with clear objectives and goals.

    My goals would be to:
    1) Consolidate the existing DNA samples of Vitiligo patients that have already participated in a study.
    2) Set up a DNA submission and testing process (see link) - Honestly I don't know one person with Vitiligo that wouldn't submit a saliva sample to help find a cure.
    3) Then someway, there needs to be universal access to the data, so researchers can isolate the problem.
    4) My last goal would be to set up an incentive, a jackpot fund, for the person/institution that finds a cure (this part would probably break non-profit guidance laws).


    The challenge isn't so much setting up the DNA testing part, it's getting people to work together and share research.

    Vitiligo is in limbo land when it comes to research and analysis. If pharmaceutical companies don't make a lot of money treating maintaining the disease, there will not be a lot of research grants. And since its not life threatening, it drops even further down the totem pole of attention (in our medical world). My boss would call it the "zone of indifference".
    • Reza > Jeff June 30, 2010 at 5:54am
      Well said. I agree. If someone with your motivation was heading something like this up with the National Vitiligo Foundation, and I could control my contributions to certain activities... I would probably donate money for this directly.
  • Reza June 29, 2010 at 6:10pm
    After reading my post I'm hoping it doesn't come across as negative. I really think it's a great idea. I just imagined myself trying to do it and those were my first thoughts. :)
    • Alex Greiss > Reza June 29, 2010 at 6:41pm
      Not at all, what would give you that idea? I'm just pointing out the awesomeness of Jeff's post. This is somebody who believes its possible, and that's where everything starts.
  • Reza June 29, 2010 at 6:43am
    Good idea. Have you checked to see if the National Vitiligo Foundation is doing this? If not, maybe it would be best to head it up with them. I'm just taking stabs but...

    1.) Probably need a 501c3 (non-profit) entity.
    2.) You'll need to help explain to people how their DNA data will be used and protected. Privacy is a big factor for most (HIPPA?).
    3.) Find out how (logistically) people can send/ship their data. How much will it cost? How much time does it take? What types of facilities do people need to go to?
    4.) With the data, what should we be looking for? DNA data is huge, we need some smart-ass people who know what they are looking for.

    There was an article recently (if i remember correctly) about scientists comparing the DNA from people with vitiligo and the general population about melanoma. (http://news.suite101.com/article.cfm/gene-variant-in-vitiligo-prote...) ... they might already have a large set of data already.

    Again, this is just my first thoughts. I might be totally wrong. :)
    • Jeff > Reza June 30, 2010 at 5:54am
      Hopefully someone from the National Vitiligo Foundation will read this and respond with their thoughts.
    • Alex Greiss > Reza June 29, 2010 at 4:07pm
      The universe needs more people like Jeff.
      • Jeff > Alex Greiss June 30, 2010 at 5:53am
        I appreciate the compliment - but you just scared everyone that knows me. lol
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