We thank you for your consideration to donate to the HD Biobank. Please review the following frequently asked questions to help you make an informed decision. If you have a question that is not answered here, please feel free to contact the coordinators at HD.firstname.lastname@example.org.
What is Huntington Disease?
Huntington Disease (HD) is an inherited brain disorder caused by a mutation in the HTT gene. HD is a dominant genetic disorder; if one parent has a defective copy of the gene there is a 50% chance of passing it on to their children. If the child inherits the defective gene they will usually develop HD in their lifetime, with typical disease onset in adulthood. The defective gene leads to the production of a toxic protein, called huntingtin, that disrupts the function of specific brain cells eventually causing them to die. This cell death happens in many areas of the brain and a person with HD will go on to develop a wide range of debilitating symptoms that affect their mood, ability to move, and to process new information. Currently there are no drugs or treatments that can slow or stop the progression of HD. There are, however, some therapies to alleviate the symptoms in particular chorea and depression. Researchers around the world are trying to understand this complex ailment with the ultimate goal of treating this devastating disease. Researchers are not satisfied with treating symptoms; they want to stop the progression at its earliest stages.
What is a Biobank?
A Biobank is a facility that stores and shares human biological samples for research purposes. Biobanks are custodians of donor samples and data. Biobanks do not own your sample or data. Instead, with your permission, they store, study and share it with a community of researcher collaborators.
Will donating my brain affect my ability to have a funeral?
No. At time of death, pre-arranged transport will be notified to deliver the donor to the nearest hospital with the capacity to facilitate your donation. Our team will collect, process and store only those samples to which you have previously consented. Within 24 hours, the donor’s body will be returned to the funeral home of your choice where funeral preparations can be completed. The tissue samples will be collected carefully and discreetly, allowing for open casket funerals if so desired.
Can I change my mind?
Yes. We are collecting, and sharing, only the samples you consent to share. We are incredibly honored to be trusted with any samples you donate but understand that you have a right to change your mind. Please contact us anytime if you wish to withdraw your consent.
Can my partner, family member, or friend donate samples?
Yes. We welcome samples from individuals with HD, affected or unaffected family members, or people with no family history who want to support HD research. All samples hold valuable information for researchers.
Where is the Biobank located?
The HD Biobank is located at the Centre for Molecular Medicine and Therapeutics. Our mailing address is:
HD Biobank at UBC CMMT
950 W 28th Avenue, Rm 3007
Vancouver, BC, Canada
I do not live in Vancouver, British Columbia, Canada. Can I still donate?
Yes, we welcome donations from anyone that wants to be a part of the research for HD. Please contact the biobank admin at email@example.com and we will make our best effort to arrange for your donation wherever you may be.
Will donating (or not donating) to the Biobank affect my treatment?
No. The HD Biobank does not share your personal, identifying information with anyone. If your sample is shared as part of a research study, your personal information will be de-identified. The researcher will only have access to necessary medical history such as affection status, ethnic background, and age. They will not have access to identifiable information such as your name, address, or contact information.
Will I get updates on the status of my samples?
No. We do not give updates to individuals or family members regarding their samples/data. However, researchers regularly publish information about new findings in HD research. HD Buzz is a great resource to learn about current HD research (https://en.hdbuzz.net/).
Will I be paid to donate my samples?
No. Your sample donation is a gift to the HD community. Any expenses associated with sample donation such as blood draws or shipping will be paid by the HD Biobank.
What types of samples is the Biobank collecting?
Blood/DNA from individuals with HD and family members.
Brain/tissue from anyone pre-consented for after death donation.
How is the HD Biobank Funded?
The HD Biobank is currently funded by individuals in the HD community just like you. We are grateful for the generosity of the community. These funds help to cover our operating costs including sample collection, storage, and personnel. We can not do this without your support.
The HD Biobank acknowledges with gratitude and respect that we operate on the traditional, ancestral and unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Səl̓ílwətaɬ (Tsleil-Waututh) Nations.