How it works

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 that they could acquire themselves. The Vitiligo BioBank will help improve researchers’ access to samples, increase the accuracy of results and make new discoveries more likely.

  • Close to 1,000 (as of Janury 2013) vitiligo patients have been recruited within the age range of 14 to 68 years.
  • All participants undergo detailed examination by a dermatologist at a screening visit (anthropometric, demographics, history, prior treatments, photos), which is recorded in our comprehensive Vitiligo Patient Profile.
  • At recruitment, participants give informed consent with the option to be to be re-approached and donate biosamples. (blood or hair follicles)
  • Donated blood is intended for use as source of genomic DNA through serum preparation which is stored in small, single use aliquotes. 

The Vitiligo Biobank uses a federated network model, which encourages participation by sample 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. 

International contributors agree on common standards for the handling of biomaterial and patient data, that have been compiled in the Standard Operating Procedures, Informed Consent Form and Vitiligo Patient Profile documents. As the legal, ethical and technical environment of contributors may differ substantially, even between countries of comparable jurisdictional systems, general rules for international sharing are difficult to define.

 

Issues of uncertainty include the right to transfer biomaterial, the scope of research allowed, and intellectual property rights. As suitable means of international law enforcement may not be available in the context of biobanking, collaborators are advised to clarify any residual uncertainty by means of bilateral contracts, for example, in the form of material transfer agreements.

 

In the Vitiligo Biobank, network samples remain and are governed by the contributing owner at each site, who has final authority over whether or not to collaborate or to release samples to qualified researchers. Each contributor will maintain control over its database, but still issue distributed queries through a standard WEB interface.

 

The focus of the VBB is on sharing and accessing biomaterial and related data within scientific communities through the integration of their biomaterial repositories in a federated Vitiligo Biobank infrastructure. For this reason, VBB administration has excluded commercial biobank software products, which are usually LIMS (Laboratory Information Management Systems) for the specific purpose of biobanking. We assume that users already have Biobank LIMS or database applications, or spread sheets to manage their biomaterial, and will want to connect it to the VBB infrastructure.

 

CloudBank is a centralized bio-IT system developed by the VR Foundation specifically for R&D into vitiligo. In addition to its core functionality, it supports four main specimen types (blood, serum, hair, DNA) and it furthermore takes into account derivatives and aliquots. Through the www.vitiligobiobank.org website, qualified researchers can now use a search engine to locate samples and anonymized data across a federated network. Future versions will allow customizable queries to determine the aggregate number of patients at the participating centers who meet a given set of inclusion and exclusion criteria, such as demographics, medications and selected lab variables. The system can be configured to support minimum reporting guidelines for biological and biomedical investigations (MIBBI.) The VR Foundation provides VBB partners with a Database Contract, under which these software tools are licensed free of charge.

 

Biobank Contributions

Researchers need blood, skin or hair samples to make discoveries that will lead to new treatments and, ultimately, a cure for vitiligo.

Patients may contribute by donating their biosamples at any of the 15 participating centers across the world. Look up the nearest vitiligo biobank location at the World Vitiligo Map. Alternatively, you may contact us and we will help you connect with the appropriate researcher.

If you decide to contribute to the Vitiligo Biobank, you will be asked to:

  • Sign a document saying that you want to participate (sample Patient Consent Form, may vary slightly depending on location)
  • Complete a questionnaire about you, your lifestyle, and your family’s medical history (sample Vitiligo Patient Record)
  • Provide a blood sample. If you are having blood drawn as part of your clinic visit, you will not
    need to have blood drawn again. Depending on the facility, you may be asked to donate a 4-mm sample of your skin or 3-5 hairs with bulbs.

Holders of vitiligo biosamples are invited to participate in Vitiligo Biobank Database. The participants own their samples and patient records. The VRF only guides them in building the collection and aggregates the anonymized data in a central bio-IT system. For detailed information about opportunities for research collaboration, we suggest you make direct contact with Chief Scientific Director Dr. Igor Korobko at i.korobko@vrfoundation.org