Building Anonymous Vitiligo Research Database. Looking for partners and input.

I believe the time has come for us to build a universal, Anonymous Vitiligo Research Database.

I am certain I'm not alone in wishing for a consolidated, concise resource to know what methods of treatment others have tried and with what success, in what country they live, when they were diagnosed, how old they are, what they eat, how much sun exposure they have had, what their thyroid levels are, dietary revisions and results, gender, lifestyle, their genetic predisposition based on family with V, and on.

I believe we all want to get to the bottom line as to what works and what people have tried, but more importantly, I believe the database, possibly dubbed "AVRD," is presently our best hope of determining, for ourselves, the most common denominators among us, and THAT will help science to help us and our children one day.

If you would like to lend a hand, let's discuss it here or by PM if you'd rather.

Thanks,

Tom

Replies

Audrey VanStockum January 6, 2016 at 12:43pm

Hi Tom,

There may be some synergies between what you're proposing and the Vitiligo BioBank. Read about it at http://vrfoundation.org/researchers--3/vitiligo-biobank
- Tom M > Audrey VanStockum January 6, 2016 at 1:58pm
  
  Brilliant find, Audrey. Thank you. They may indeed compliment one another. I'm looking for all takers to help, presently, if interested in defining what the fields should be. With a think tank assembled, we will close and build it, then present it to the good people here to begin populating the database with records.
  
  Unlike the BioBank, our information will be for all to see, with anonymous entries comprising data that anyone can search for self-help; then come to places like this great site to discuss further and recommend additional fields, etc.
  
  From the data we should be able to extrapolate how many were helped with which methods, and which methods show the most promise. It should be those methods targeted by those of us wishing to venture. As it is, there are so many avenues that promise us that stringent diets work, for example, or this vitamin or that combination, etc.
  
  The scientific community will be interested to query the database as well, I'm certain, thereby helping find common denominators that may lead to a cure. One can hope.
  
  Thanks again,
  
  Tom
Tom M January 4, 2016 at 8:33am

Super.

I have the database functionality part of it and will provide its hosting. We'll need to interface with it.

First we need to formulate fields/questions that require very short answers. Gender, for example, can be answered in one word.

I'd like to get input here for the fields.

I've submitted some I feel are viable, above.

Will you, and others, indicate some other areas, or have I covered them?

Let's get a feel for what people want.
- rsblr > Tom M January 4, 2016 at 8:57am
  
  We can add other autoimmune disease along with thyroid viz. celiac, arthritis, psoriasis, etc. Types of treatment would have to be exhaustive (TCM, FT, Ayurveda, Unani, allopathy, etc). Also, how would you categorize ppl who have tried several treatments with varying efficacy and relapse ?
  - Tom M > rsblr January 4, 2016 at 9:24am
    
    Good points.
    
    Such a field could be a user-supplied value, versus a menu list. Let them tell us, in a word or acronym, the treatment(s) they used.
    
    Perhaps a percentage column could be provided next to each treatment field.
    
    Looking for answers as well, of course.
rsblr January 4, 2016 at 8:24am

Great thought... there should be some website(hopefully free) where we could setup a survey and generate some statistics. I am willing to help.