Vitiligo Biobank Background
The study of multifactorial diseases, such as vitiligo, requires analysis of complex interplay of symptoms, treatments and outcomes across a large number of people. Population surveys and biobanks are indispensable research tools, required for downstream therapy development. Even small collections of biosamples may be extremely precious for researcher in academic institution or biopharma company.
Until recently, vitiligo researchers were generally limited to conducting studies on patient samples they could acquire themselves. When the Foundation started there were no centralized biological database along with the pre-existing body of the clinical management or the historical study data, which is required in order to proceed with the development of specific therapies. We have run a special investigation study to determine whether VRF shall establish its own biobank.
Then the project's leadership crafted a careful strategy for vitiligo biobank development, with special attention paid to the security and confidentiality of the donor's information. 'Future proofing' involves collecting and processing samples to permit the widest possible range of scientific uses, while avoiding approaches that would impede possible future uses.
The Vitiligo Biobank uses a federated network model, which encourages participation by biosample owners who are concerned about their ownership of samples and associated clinical data. The resulting integrated biobank consists of our central facility, a cloud-based IT system, distributed collection and storage sites, and international biobank framework agreements.
We have started the first Vitiligo Biobank with a 100+ sample collection from the completed research project in genetics in late January 2013. Three months later, it held approximately 1,000 biosamples and detailed clinical profiles. Our target number is 10,000 samples and we encourage patients to donate samples. The primary biorepository is located in Moscow (Russia) with networked locations in 11 countries. See Map »
Photo: Vitiligo Biobank blood samples are stored at -70C until they are needed for specific research study
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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
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