Indiana Pediatric Biobank
Marissa Just
Primary Investigator
Brief description of study
What is the purpose of this study?
The purpose of this study is to collect and store human biospecimens, and protected health information in order to develop a comprehensive pediatric biobank in Indiana that can be used by scientists for future unspecified research studies. We are doing this research study because we are trying to find out more about how and why illnesses occur in children.
Detailed description of study
Biospecimens will be collected in one or all of the following ways:
1. When a biospecimen is already being collected as part of your normal medical care or for a separate research project.
2. As leftover material that was collected for a medical procedure that is not needed for your diagnosis and/or medical treatment.
3. Specifically for this research project and not part of your normal medical treatment. (These biospecimens will only be collected when there is no increased risk to you. Examples being blood, bodily fluids, and swabs.)
The Indiana Pediatric Biobank is partnered with the Indiana Biobank and the Indiana Unversity Simon Cancer Center (IUSCC) Biospecimen Bank. Biospecimens can be collected and sent to the Indiana Biobank and IUSCC Biospecimen Bank. These biospecimens will also be linked to your protected health information and will still be used by researchers who are studying pediatric illnesses. Any information that can be used to identify you will only be known to and kept confidential by the Indiana Biobank and IUSCC Biospecimen Bank staff.
Your biospecimens may be sent for genetic testing. This test will involve getting some DNA from your biospecimen. DNA is the genetic “blueprint” for your body. We will test several genes to help us learn things like what causes certain health problems. Since we cannot know the exact questions that will be studied by researchers in the future, there may also be some genetic tests performed to learn about other diseases. Therefore, we will keep the biospecimens for an indefinite period.
We may use the specimens collected as a part of this study for whole genome sequencing, which involves mapping all of your DNA.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: All, Riley
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Gender: All
Inclusion Criteria
• Subjects diagnosed with pediatric disease, adult survivors of pediatric disease, family members, and healthy subject controls with appropriate informed consent and HIPAA authorization (and assent for children 7 years old) or
• Subjects who have biospecimens stored at a hospital/clinic within the Indiana Network for Patient Care (INPC) and are no longer routinely followed by that hospital or are deceased
Exclusion Criteria
• Unwilling to provide consent/assent (excluding those subjects who are lost to follow-up or are family members of subjects who have medical information shared by the subject, which will both be included utilizing a waiver of consent, and decedents)
