VRF is developing the Biobank to advance clinical research in vitiligo. It is hoped that future research using information from the Vitiligo Biobank will lead to new discoveries and therapy development.
By letting your samples be used by the Vitiligo Biobank you may help researchers study the neglected skin disease illnesses that touch over 65 million people worldwide.
There is typically only a tiny physical risk because sample taking is a very simple procedure. The procedure carries the same risk as, for example, any minor cut which punctures the skin and carries a very small chance of an infection being introduced into the body.
This depends on the participating biobank location. Whilst you have the right to withdraw consent, it may be impossible for biobanks that anonymize samples to be able to identify your particular sample in order to destroy it.
All medical research results depend on appropriate statistical analysis. To arrive at conclusions that are reliable and not likely to be a coincidence or due to chance, it is always necessary to examine a large number of samples.
No. The samples will be given a code and that code will be entered into a specially protected computer system. This computer can match the sample with facts about the person’s health that is contained in his or her medical record. Researchers will NOT be able to tell who the health facts come from, because the code removes the information about the sample that would match it to one single person.
No. Because we will not know whose sample is whose, it will be impossible to give anyone results about their sample.
No. You will not need to pay for tests and procedures done just for the Vitiligo Biobank. The procedure you will need to have to take part in is a blood draw or hair pluck.
No. There is a chance that VR Foundation may make money from the use of your donated sample. If that happens, you will not be offered a share of the earnings. As a not-for-profit organization, VR Foundation uses all profits to support ongoing research and educational activities.
There are at least 15 participating biobanks around the world. They may be found in different kinds of institutions depending on what kind of research or care the organization carries out. Locate your nearest biobank at the World Vitiligo Map or contact us.