Get Involved in the BIGKiDs Study
Contact me about BIGKiDs participation
What is the BIGKiDs Study?
The BIGKiDs Study is a biobank that holds the health information and biosamples (like blood or saliva) from patients with kidney disease at Boston Children’s and eventually in the US and abroad.
The goal of the BIGKiDs Study is to discover how genetic changes cause or contribute to nephrotic syndrome. Through participating patient samples, BIGKiDs will build a library of biosamples and health information from each individual.
If you decide to participate in BIGKiDs, you will be supporting researchers in their efforts to find better ways to detect, treat, prevent, or even cure kidney, urinary tract disorders and other diseases and conditions.
Your samples and/or health information may be shared with approved researchers. If your samples and information are shared outside of BIGKiDs, we would remove information that could be used to identify you, such as your name. It would be labeled with only a research code in order to protect your privacy and confidentiality.
You can learn more about BIGKiDs by emailing bigkids.biobank@childrens.harvard.edu
How does the BIGKiDs Study work?
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There are three tiers of participation in the BIGKiDs Study:
One-time saliva sample
Cheek swabs and saliva help us uncover DNA sequencing, which allows us to identify genes that are common in patients with nephrotic syndrome.
One-time saliva & blood and/or urine samples
Blood samples can show us a complete set of genes that can help us look at proteins, DNA, and phenotype.
Urine tells us what type of cells or proteins are in a person's body. Doctors often use urine samples for diagnosis and identifying disease status.
Ongoing samples over time
Collecting samples over time can provide a more comprehensive understanding of the disease or condition being studied and can potentially help researchers develop better treatments and cures.
Participation at any tier is extremely valuable in advancing research efforts.
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Saliva kits are mailed to you from our BIGKiDs team. These kits provide usage instructions and will be mailed back to us in Boston.
Blood and urine samples can be collected at the time of other lab work locally.
There are NO additional costs to you or your insurance company for participation in the study.
Am I eligible for the BIGKiDs Study?
There are very few restrictions as to who can participate in this study. Our eligibility criteria is anyone with childhood-onset nephrotic syndrome who is currently in the United States. This includes patients and/or family members who:
respond to steroids and other immunosuppressant medications
are resistant to steroids and other immunosuppressant medications
had nephrotic syndrome in the past but not longer have it
do not have family history of nephrotic syndrome
have a family history nephrotic syndrome
Please note, that you are eligible to be in BIGKiDs even if you are already participating in other kidney disease research studies. If you are enrolled in another study, we will make sure to communicate with other research teams about BIGKiDs.
Participation is always voluntary and participants can withdraw at any time.
There are NO additional costs to you or your insurance company for participation in the study.
Why you matter
Since nephrotic syndrome is a rare disease, each patient who participates in the BIGKiDs study matters a great deal. Without their participation, we wouldn’t be able to make the critical discoveries needed to eventually treat and cure this disease. Our goal is to recruit all interested people with childhood-onset nephrotic syndrome seen at Boston Children’s Hospital and to collaborate with other interested physicians and families within the broader nephrotic syndrome community.
Do you have questions about the BIGKiDs Study?
We understand that you and your family may have additional questions about the BIGKiDs Study. We hope to do our best to answer all questions and concerns you may have. We encourage you to read our frequently asked questions and reach out to our BIGKiDs Team (bigkids.biobank@childrens.harvard.edu) for further questions.
Meet Matt Sampson
Principal Investigator
Matt is a Pediatric Nephrologist and genetic epidemiologist in the Division of Nephrology at Boston Children’s Hospital. In addition to taking a “kidneyomics” research approach to glomerular disease, he cares for many children with diverse kidney diseases. He seeks to identify those children with a likely genetic basis of their disease for inclusion in research studies and disease-based registries.
Meet Kathy Madrazo
Clinical Research Specialist
Kathy graduated as an MD from Mexico and now an essential part of the BIGKiDs team. She is passionate about research on rare diseases because of their profound impact on many individuals and their families. Kathy is dedicated to supporting the nephrotic syndrome community and advancing our understanding of this rare disease.
Connect with our BIGKiDs team
bigkids.biobank@childrens.harvard.edu
Enders 509 320 Longwood Avenue Boston, MA 02115