Biobanks have been used since the 1990s. While there have been biobanks created and dedicated for almost every serious condition for different forms of cancer, autism, Parkinson’s disease, cystic fibrosis, spina bifida, and other chronic conditions, no national biobank has existed for Down syndrome until now with our DSA Biobank.
A biobank is a collection of biospecimens, such as blood, hair, tissue, and DNA, which are used for medical research in the development of new treatment regimens for chronic illnesses and diseases. Today, they are a key resource for many academic, commercial, governmental, and pharmaceutical institutions.
The DSA Biobank is located at Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio. CCHMC has over 15 years of biobanking experience. The CCHMC Discover Together Biobank manages and processes all samples collected and donated to the DSA Biobank.
No. You or your loved one do not need to go to Cincinnati, Ohio, to donate samples. If your loved one with Down syndrome is age 16 or older, we can set up an appointment for their samples to be collected in the comfort of your own home.
If your loved one is younger than 16 and you would like to participate in donating a sample to our DSA Biobank, there are options on the horizon for you to collect certain types of samples from the comfort of your own home.
As an organization, we do not want to put the risk of your loved one at a level of increased harm. Therefore, we do not collect blood samples from children under the age of 16 unless they are under the supervision of a medical provider.
Research, in general, is used as supporting evidence to help improve the health outcomes of individuals over time. The DSA Biobank has established a specific process that works to ensure that these specimens are only shared with medical researchers who have a specific interest in understanding health conditions that impact people with Down syndrome. This process requires the researcher to submit an application which is reviewed by several people to ensure their request will benefit the healthcare and treatments for people with Down syndrome.
By participating and providing samples, certain studies can be implemented quicker than others. This depends on the nature of the study and what research questions are being explored.
Learn about our studies here.
No. The DSA Biobank only shares de-identified information with researchers. Though there is a chance you may be identified through biological results from your sample, this likelihood is rare. The chance is extremely small that the result can be traced back to you.
Each participant is given a globally unique identifier (GUID). This is a pseudo-random number used to identify a user account. It links your survey responses with the biospecimens collected.
If you choose to contribute to the DSA Biobank, these are your legal rights:
- You must give consent or permission to participate in the research study.
- You have the right to be told the purpose of the research study.
- You must be informed of the possible risks or discomforts you may experience if you decide to participate.
- Your personal information will be kept private.
- You can withdraw from the study at any time.*
*Email firstname.lastname@example.org at any time to remove your biospecimen and survey from our studies. Note that if your biospecimen has already been shared with an Investigator, it may not be possible to retract any information already generated in that study.