Vitiligo Biobank FAQ: Contributions by Patients
1. Why is VR Foundation developing the Biobank?
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.
2. Why should I take part in Vitiligo Biobank?
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.
3. Is it safe to join your biobank?
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.
4. Can I leave your biobank after I have joined one?
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.
5. Why does a biobank need my sample, and samples from so many people?
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.
6. Will anyone know that this is my blood or hair?
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.
7. Will someone let me know if my sample shows I am at risk for health problems?
No. Because we will not know whose sample is whose, it will be impossible to give anyone results about their sample.
8. Will there be any cost?
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.
9. Will I be paid?
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.
10. Where can I find participating biobanks?
There are at least 11 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.
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What is coming?
NY Vitiligo Community Meeting in September
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Vitiligo Advocacy Day at the US Capitol
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