At the VR Foundation we have put forward a clear vision for the standardization of vitiligo medical records, clinical data points and biosample collection procedures.
Our current efforts to implement vitiligo health data standards are driven by issues related to the quality, cost and applicability of existing therapies, patient safety concerns, and our desire to see clinical research findings implemented in clinic as quickly as possible.
Currently, it is easier to collect data on vitiligo patients for prospective clinical trials in advance than it is to access similar clinical data retrospectively. We recommend using the anonymous electronic patient record built in to the Vitiligo CloudBank to participate in collaboration, grants and other programs supported by the VRF.
Alternatively, you can download and use these traditional paper-based forms :
Please be aware that the Vitiligo Patient Record is not a traditional form to be filled out - it actually refers to the variables to be collected and the format they should take. Doctors can make adjustments based on specific needs and add more fields if necessary. We expect the recommended data set will be collected as part of routine primary and follow-up visits.
If you have any questions regarding patient data and the collection of data, please contact us.
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What is coming?
NY Vitiligo Community Meeting in September
Our next meeting will be on Thursday, September 21st, at 7PM - 8:30PM on the 11th floor of NYU's Ambulatory Care Center at 240 East 38th Street, between 2nd and 3rd Av...21 September 2017 19:00, 11th floor of NYU's Ambulatory Car...
Vitiligo Advocacy Day at the US Capitol
Save-the-Date for the much anticipated Vitiligo Advocacy Day at the United States Capitol this fall. As many of you know, the Advocacy Committee of the Global Vitilig...04 October 2017 10:00, Washington, DC
Why there is no drug for vitiligo yet?
Despite the dearth of medications available to treat psoriasis - a disease with similar prevalence numbers and impact on quality of life - vitiligo has no known cure o...
How can I cure vitiligo?
There is no cure for vitiligo, but there are a number of effective treatment options that can be discussed with your GP or dermatologist. The aim of treatment is to st...
Is it possible to stop the progression of vitiligo?
It is true that vitiligo progression could be stopped in 4 out of 5 cases by the use of potent systemic corticosteroids. However, systemic corticosteroids might ha...
What is vitiligo?
Vitiligo (pronounced vit-ill-EYE-go) is a relatively common skin disease characterized by smooth, white, painless spots or patches on various parts of the body. It doe...