What is a biobank?
A biobank is similar to a library. It holds samples, known as “biospecimens,” that are provided voluntarily by hundreds, sometimes thousands, of individuals. These samples, which can include blood, saliva, tissue, stool or urine, are important to scientists, who study them to learn about elements that affect children’s health.
Why join the Nicklaus Children’s Hospital Biobank?
With minimal effort, you and your child will contribute to scientific knowledge that can lead to improvements in healthcare management and treatment for children and lead to brighter tomorrows for young people everywhere. The study of biospecimens can help scientists learn:
- How the body works
- How disease develops and affects the body
- How to treat diseases and conditions
Will biobank participation directly benefit my child?
Medical research is time consuming. It is not likely that knowledge gained through the biobank will directly benefit you or your child’s medical care plan. However, it may benefit future patients.
Who can join the Nicklaus biobank?
Any child and his or her family members can participate in the Nicklaus Children’s Biobank. Participation is always voluntary and participants can withdraw at any time.
How can we get started?
If you are interested in contributing, you will be asked to review and sign an informed consent form allowing the Nicklaus Children’s Biobank to collect an extra sample during the next clinical visit, and/or store samples that are no longer needed for clinical care, along with information in your medical record.
Is there a fee for participating?
No, there are no additional fees associated with biobank participation.
What will happen to the sample provided? What about privacy?
Nicklaus Children’s is collaborating with Sanford Health in Sioux Falls, South Dakota for long-term sample storage. Before shipment, samples are de- identified. This means that all personal information is removed from the sample and stored within Nicklaus Children’s secure data system. Samples are assigned a unique identification number.
Researchers will only see this unique identification number and not the identity of the individuals who provided the samples. Nicklaus Children’s will always retain ownership of all samples and ensure safekeeping for all participant personal information.
How will my sample be used?
Samples will help researchers and doctors understand disease and may help identify treatments or cures. Examples of ways in which your sample may be used include population studies of genetics, cancer research, and assessments of treatments and other medical advancements. Any researcher or doctor who seeks to use samples from the Nicklaus Children’s Biobank needs to submit a proposal to the hospital’s scientific committee and obtain approval from the institutional review board, an administrative body that protects the rights and welfare of human research subjects.
What if we want to withdraw from the biobank?
If you or your child decide at any point that you no longer want to participate in the biobank, Nicklaus Children’s will remove your samples. However, when data has already been analyzed and included in an academic paper, it is not possible to omit your sample from the data.
Is it possible to know about the studies conducted using my sample?
We will publish information about our studies on our website.
Does my family have any rights over the study results?
Research results involve intellectual property rights relating to the study outcome. Those rights do not belong to the donors or their families.
Ethics
The Nicklaus Children's Biobank is committed to ensuring that the collection of research biospecimens does not interfere with patient care and that the privacy and confidentiality of all volunteer donors are maintained.
Informed consent for sample collection and research use is obtained from all patients. NCH Biobank complies with all existing USA federal, state, territory and institutional requirements pertaining to the participation of patients in research, as well as the collection and use of research biospecimens and accompanying clinical data.
Collection of research biospecimens and associated clinical data has been approved by the research ethics committees at participating healthcare institutions. All research applications for biospecimens and clinical data must be accompanied by research ethics approvals of the research study and are subject to further review and approval by an internal Advisory Review Committee.
All biospecimens and associated clinical data are de-identified so that a patient’s identity is accessible only to NCH Biobank authorized staff. Identifying information is not disclosed to any recipient medical researchers.