About

 

The Vitiligo BioBank (VBB) is a non-profit, independent collection of biological samples and detailed associated data, designed to facilitate medical research into vitiligo, a devastating skin disease that is much neglected. Here at the Vitiligo Biobank we collect, store and analyze biological samples, which are then made available to the scientific community and research organizations investigating pathogeneses, diagnostics, new treatments, and ultimately a cure for vitiligo. The core asset of the Vitiligo Biobank is a large collection of well-organized hair, blood, serum and DNA samples, integrated with comprehensive and anonymized patient records.

                                                

What is a Biobank?

 

Biobanks, sometimes called biorepositories or biomaterial banks, represent key a source for biomedical research. Defined in the most general terms, a biobank is a structured collection of biological specimens and corresponding donor data.

The discovery of disease pathways and analysis of their impact and significance critically depend on timely access to sufficient biomaterial and related information. For example, if a researcher wants to test a new biomarker for a specific disease, he or she can request biobank administration for information on what biomaterial is available from corresponding patients, and what related data is stored in the warehouse. This will allow the researcher (or biomaterial owner upon request) to run new analyses in the lab, to correlate them with detailed clinical data from both patients and healthy control subjects, and build a new model. Such an approach will provide new research results much faster and expedite downstream therapy development.

 

What is the Vitiligo Biobank?

 

In the Vitiligo Biobank, biosamples are linked to anonymized vitiligo patient data, as well as data related to the disease, medical treatments that have been conducted, familial situation and environment-related data. The VBB plays a central role in the research of causes and mechanisms of vitiligo, conducted both internally and throughout the network of collaborators.

The main purpose of the Vitiligo Biobank is threefold:

  • From a researcher perspective: to have access to the biomaterial with the specific characteristics that match the intended research study.
  • From a biobank operator perspective: to make their own biomaterial stock, and accompanying data available to the research community.
  • From a user perspective (dermatologist, patient): to track the course of the disease, record treatments and their outcomes, store laboratory analysis data, photos, record visit notes and schedule follow-ups.

This approach is called 'integrated biobanking', which means the integration of networked or federated biobanks under one search engine for centralized access to samples and related data within Vitiligo Biobank infrastructure, and good clinical and legal practice.

 

VBB Consortium

 

The VBB participants agree on a common standard for handling biomaterial and patient data which has been compiled by the VRF in the Standard Operating Procedures, Informed Consent Form and electronic Vitiligo Patient Profile documents. The VBB Executive Leadership Committee periodically reviews and agrees upon policies and procedures for the Vitiligo Biobank. All materials are available for download through our Resource Center.

 

Collaborating institutions are expected to provide their own funding for personnel and technical resources, and oversee that related data, clinical data and patient consent variables are transferred from paper to electronic format and validated. 

 

Participants are also expected: 

  • to maintain their local biobank node, communication and IT hardware to ensure effective collaboration, 
  • to populate local bio sample and associated consent databases regularly, maintain data integrity and standard terminology, 
  • to appoint a person to function as a primary contact for approved researchers, oversee sample distribution, tracking and reporting.

 

Technical Issues

 

The technical developments of the Vitiligo Biobank are mainly driven by the scenarios provided  by the partners in the context of R&D and clinical research related to vitiligo. All patient data kept in the central data warehouse is anonymized or pseudonymized.  Given the rapid progress of research in the biobanking field, this website provides only a framework and will be updated continuously.

The VBB is sponsored by the non-profit Vitiligo Research Foundation (New York, USA.) The Vitiligo Research Foundation's mission is to expedite the development of vitiligo therapy, and an integrated biobanking solution is critical to its success.