What is the National Psoriasis Victor Henschel BioBank?
The National Psoriasis Victor Henschel BioBank is a critically needed resource for psoriasis researchers. It is an innovative collection of biological samples (DNA from blood) and clinical information to further the field of psoriasis genetics research. The National Psoriasis BioBank will be the largest single collection of psoriasis DNA samples in the world accessible to qualified researchers. This study was approved by the Genetic Alliance BioBank Institutional Review Board on March 1, 2005.
What is the Genetic Alliance BioBank?
The National Psoriasis BioBank is part of the Genetic Alliance BioBank (GA BioBank), a centralized repository for the collection, storage and distribution of biological samples (including DNA, serum, cells and tissues) and clinical data for genetic researchers. The GA BioBank is a nonprofit organization established by seven patient advocacy organizations, including the National Psoriasis Foundation. These organizations share resources for their BioBanks, such as the contract to the independent lab that processes the samples, but each organization will maintain ownership, control and costs associated with their sample collection. The Psoriasis Foundation has a position on the GA BioBank Board of Directors that guides the GA BioBank protocols and procedures. Visit www.biobank.orgto learn more.
Who can participate?
The National Psoriasis BioBank is currently collecting DNA from two groups of people: those who have psoriasis and/or psoriatic arthritis (cases), and those who do not (controls). There are several criteria that apply:
Case participants (those with psoriasis and/or psoriatic arthritis) must:
- Be age 15 or older
- Be the only person in their immediate family participating in the BioBank ("immediate family" is defined as grandparents, parents, siblings, children and grandchildren)
- Have a current or recent dermatologist and/or rheumatologist who can verify their diagnosis
- Have not given blood or tissue sample to another psoriasis-related study
- Have no personal history of several other inflammatory disorders, including: eczema, atopic dermatitis, and Cutaneous T-cell lymphoma
Control participants (those without psoriasis) must:
- Be age 18 or older
- Be the only person in their immediate family participating in the BioBank
- Have no personal or family history of psoriasis or psoriatic arthritis
- Have no personal history of several other autoimmune and inflammatory disorders, including: Crohn's disease, lupus, eczema, rheumatoid arthritis, multiple sclerosis, alopecia areata, atopic dermatitis, ulcerative colitis, type I diabetes (juvenile onset)
What samples will be collected?
The National Psoriasis BioBank is currently collecting DNA from blood samples and swabs of cheek cells from participants. We are also collecting clinical information or medical histories from everyone who donates a sample. Samples will be processed and stored at a private laboratory and not at the National Psoriasis Foundation.
How are the samples collected?
Approved participants will receive a donation kit in the mail. Participants will take this kit to their doctor, clinic or blood draw center and have their blood drawn. We provide the packaging and postage to send the sample to our lab.
How will researchers use the samples?
Qualified scientists will request samples from the BioBank to use in their research to identify the genes that cause psoriasis and psoriatic arthritis. This BioBank collection will be used to evaluate individuals' disease over time in a way no other collection has done to date. This allows scientists to ask additional, sophisticated questions about the disease's process.
Will the samples be used for any other research?
The purpose of the National Psoriasis BioBank is to support and drive research about psoriasis and psoriatic arthritis. However, scientists who are studying other diseases may find psoriasis and psoriatic arthritis samples valuable to their area of research that, in the long run, benefits patients with psoriasis and/or psoriatic arthritis, or other patient populations. If you wish only to have your samples used for psoriasis and/or psoriatic arthritis, you may specify this on the BioBank consent form.
Will I receive any information or results concerning my sample?
You will not receive any information from your donated samples. You will not receive results on the research performed using your samples.
How will my privacy as a sample donor be protected?
The National Psoriasis BioBank protects your privacy. Scientists accessing your samples will receive only anonymous clinical information; a scientist will not be able to make a direct connection between your name and your sample ID number. Learn more about how we protect your privacy.
I want to participate. How long will it be before I am accepted in the study?
The whole process takes about three months. The first step is to complete the registration form, which we will process within a week. The second step is to read and sign the consent form and complete the diagnosis confirmation form if you have psoriasis or psoriatic arthritis. It will take approximately 1 week depending on your doctor's response time. If you are accepted into the study, you will receive information on how to donate a sample and complete an additional questionnaire. We appreciate your patience while we process your application.
Will participation in the National Psoriasis BioBank affect my health insurance or my status at the National Psoriasis Foundation?
Your participation in the National Psoriasis BioBank is absolutely anonymous and will in no way affect any health program or insurance you have, nor will it affect the benefits you receive from the National Psoriasis Foundation. Your participation in the National Psoriasis BioBank is completely voluntary.
Are there any financial considerations?
You will not receive money or other compensation or remuneration for your donation to the BioBank. Likewise, we will not charge you for donating a sample. The laboratory or clinic drawing your blood for your donation may request a payment, or it may be waived. In the event that a fee is required for your blood draw, we can reimburse you.
How long will my sample be stored?
Your sample and clinical history will be stored for an indefinite period of time.
What if I change my mind and want to withdraw my sample?
You can change your mind about donating a sample at any time. Your sample that is in use or in storage and your clinical information will be destroyed. To withdraw your sample, please contact the BioBank team with your request by sending an e-mail to firstname.lastname@example.org, or call 800.723.9166.
What if I have donated samples for research before?
Those who have donated a blood or tissue sample in the past for another psoriasis-related study, tissue bank or other BioBank are not eligible for the National Psoriasis Victor Henschel BioBank.
What if I live outside the United States?
The BioBank is only able to accept participants who live in the United States.
Who is Victor Henschel?
Victor Henschel struggled with psoriasis and psoriatic arthritis for more than 35 years. He believed strongly in helping others. This generosity was carried down through his family and, in 2006, the Barbara and Neal Henschel Charitable Foundation pledged a $1 million gift to the National Psoriasis Foundation to be directed solely to the BioBank. It is the Henschel family's hope that the National Psoriasis Victor Henschel BioBank will provide scientists with the resources they need to study the disease and, ultimately, find a cure.
Where can I go for answers to any questions I may have now or in the future?