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.
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
What is coming?
United Nations ECOSOC session
The tenth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) will take place from Tuesday 13 to Thursday ...13 June 2017 10:00, UN Plaza, New York
World Vitiligo Day celebration conference in Detroit, USA
U.S. World Vitiligo Day 2017 Theme: "Step Up for Vitiligo: A Call for Truth, Hope and Change!" Reflecting the mission of the “Step Up for Vitiligo” campaign that came...23 June 2017 18:00, Detroit, Michigan, USA
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