Fulfilling
potential.
Fueling
Breakthroughs.
The DownSyndrome Achieves Biobank is a repository for biosamples donated by people with Down syndrome and their immediate biological family members. The DSA Biobank is housed at Cincinnati Children’s Hospital Medical Center.
The DSA 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. Having the DSA Biobank will change all that.
Frequently Asked Questions
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.
Where is the DSA Biobank located and how is it managed?
The DSA Biobank is located at Cincinnati Children’s Hospital Medical Center which has more than 15 years of biobanking experience. CCHMC will also manage and process all samples donated to the DSA Biobank.
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.
Is there a cost for the visit or blood draw?
There is no cost to you for donating your blood sample to the DSA Biobank.
Where do I go to donate a blood sample?
We are currently scheduling blood sample donations at Lee Specialty Clinic in Louisville, KY and Cincinnati Children’s Hospital Medical Center. To schedule an appointment to donate a blood sample, please call (614) 362-3441 or email dsaBiobank@dsachieves.org. Other clinical collection sites will be open soon.
What are the benefits of biobank research?
Biobank research using health information is done to learn the causes of human diseases and find better ways to prevent and treat diseases. The benefits of biobank research include understanding more about the causes of diseases like autism, cancer, and asthma, and finding better ways to prevent and treat these diseases.
Why is biobank research important?
Biobank research is important because research often works better when researchers from many different places work together and use information from many different people. Biobanks store and use information from large numbers of people, some who are sick and some who are not. Researchers compare information between people who are sick and people who are not sick. This helps them learn more about how to prevent and treat a wide range of diseases like autism, cancer, and asthma.
Does biobank research benefit the participants?
The purpose of biobank research is to help people in general. It does not help the people who take part in the biobank right away, but it may help them in the future.
What kinds of health information are collected and placed in biobanks?
If a person decides to take part in a biobank, copies of their health information are placed in the biobank. This health information is collected by doctors and researchers, and may include samples that are left over from tests that doctors have ordered. It may include information from the person’s medical record such as test results and information about diseases, as well as from blood, tissue, and other samples. It may also include their genetic information.
What do biobanks do with stored health information?
Biobanks share the stored health information with researchers who wish to do medical research with the information. The types of health information from the biobank that researchers use depends on the kinds of diseases or conditions that the researchers are studying. Some researchers may use the health information to develop products that can be sold, like new drugs or tests. If they do, they do not share the profits with the people whose health information is in the biobank.
Do biobanks share information that could identify someone?
Biobanks do not share information that could easily identify someone. Every person in the biobank is gevn a unique number. Biobanks share that number but they remove personal information such as names, addresses, social security numbers and birth dates before they share health information. Thus the chance that your health information could be traced back to you is extremely small.
What if someone agrees to take part and later changes their mind?
People can ask for their health information to be removed from a biobank at any time. However, if health information has already been shared, it is not possible to remove the information from ongoing studies.
where do i go if i have additional questions?
Email us at dsaBiobank@dsachieves.org and we will contact you to discuss your questions.
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