lead the way. The DownSyndrome Achieves DS Biobank is a repository for biosamples donated by people with Down syndrome a
One day people with Down syndrome will lead the way The DownSyndrome Achieves DS Biobank is a repository for biosamples donated by people with Down syndrome and their immediate biological family members. The DS Biobank is housed at Nationwide Children’s Hospital (NCH) Biopathology Center in Columbus, OH.
The DS Biobank will ultimately hold the largest collection of blood and other donated biological materials from people with Down syndrome and their families ever available in one central location, accessible to all researchers interested in understanding more about Down syndrome and health conditions related to the 21st chromosome. Until now, researchers have been slowed by a lack of access to large pools of data and biological samples. Seeking out qualified candidates to donate biosamples can take a long time, and it can be challenging to obtain a statistically significant amount necessary for a full study. Having a DS Biobank will change all that.
“A biobank provides researchers with the potential to unlock some of the mysteries associated with Down syndrome,” says Brian Skotko, MD, MPP , a medical geneticist and co- director of the Down Syndrome Program at Massachusetts General Hospital for Children. “Currently, researchers do not have readily available and curated blood and tissue samples to advance our understandings of the conditions that co-occur with Down syndrome. I am excited that the Down syndrome community will have this national resource, which is long overdue.”
What You Should Know •
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The DS Biobank will be open to researchers seeking to improve the health and well-being of individuals with Down syndrome, and conducting studies that deepen our understanding of DS and related health conditions. The DS Biobank will support studies that advance research for the DS community. The DownSyndrome Achieves DS Biobank will not support research that inhibits or prevents the conception or birth of people with Down syndrome.
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The DS Biobank is governed by a Biobank Oversight Committee and Utilization Committee, comprised of researchers and parents, and informed by self advocates.
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A Scientific Advisory Panel will advise on biobank operations and collection processes, and will help identify potential areas of research support.
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The DS Biobank will rollout in three phases, and will have an estimated 5-year operating budget of $1.5M.
FAQ What samples are you collecting and why? We are beginning with blood collection because blood is foundational to studying human health. In the future we will welcome the donation of other biologic samples. Who is eligible to participate? Any person with Down syndrome, or their immediate biological family member, may give a blood sample provided they, or their guardian, consent to participate. How will my blood sample be used? How will it not be used? Usage of the samples in the DownSyndrome Achieves DS Biobank is managed by a Biobank Utilization Committee (BUC) comprised of researchers and parents of people with Down syndrome, with input from a self-advocate committee. The BUC reviews and approves research projects that meet rigorous scientific and ethical guidelines. These guidelines detail specific types of research the DownSyndrome Achieves DS Biobank will not support, including any research that inhibits or prevents the conception or birth of people with Down syndrome.
How do I know that the DownSyndrome Achieves DS Biobank project will protect and properly manage the use of my donated sample? There are strict rules and ethical guidelines regarding the information technology infrastructure, research practices, and laboratory operations that use donated samples. The DS Biobank Oversight Committee adheres carefully and thoughtfully to the ethics, applicable laws, rules and regulatory requirements surrounding biobanks. We are committed to respecting the rights of blood donors, while simultaneously serving the legitimate needs of biomedical researchers dedicated to improving the health and welfare of people with Down syndrome. Where can I go if I have additional questions? Please visit our website at www.dsachieves.org for more information about the DownSyndrome Achieves DS Biobank. If you have additional questions that are not answered there, email us at
[email protected] and we will contact you to discuss your questions.
DownSyndrome Achieves PO Box 1596 Dublin, OH 43017
email:
[email protected] 614.362.3441 Federal 501(c )(3) Tax ID#: 30-0542477
