The Pediatric Hematology, Oncology, Neuro-Oncology & Stem Cell Transplantation Biorepository at Ann & Robert H. Lurie Children's Hospital is advancing the study of childhood diseases by collecting, storing, and testing biological samples (e.g. blood, saliva, tissue, bone marrow) which have the potential to further scientific research and unlock breakthroughs. Families who choose to provide samples to the biorepository are helping to advance a mission of providing “bench to bedside” translational science which is improving outcomes for those with blood disorders and childhood cancers.
Scientists are continually working to understand how a child's genes impact their health, susceptibility to disease, and tolerance of medications. Access to biological samples is essential to developing new scientific breakthroughs. A sample is often taken as a routine part of clinical care (eg. blood draw, tissue biopsy) and excess is disposed of at the end of treatment. Participation in a biorepository allows a left-over sample to be saved and used for research purposes instead of being destroyed. Your child will not undergo any additional invasive procedures for the sole purpose of joining the biorepository. Your child may be asked to provide samples at various points in time during their care so scientists can understand how a patient responds or does not respond to prescribed treatments.
Biorepository studies may include genetic testing to better understand how blood diseases, tumors and cancers grow and change over time. During genetic testing, specific germline mutations may be discovered, and these mutations may have the potential to impact the health of your child or other members of your family. You may choose to be notified of any mutations found in your samples, but notification will not automatically be provided unless requested. Due to the volume of samples collected and the nature of research activity, we are unable to notify individual biorepository participants if a scientific breakthrough is made thanks to your specific sample.
Biorepository samples are only released to researchers who have obtained Institutional Review Board approval for a study and justified the need for using biological samples. An internal committee of clinicians, scientists and administrators review all sample requests. Research ideas are generated by scientists who have expertise related to their area of study.
Liz Sokol, MD, performs pharmacogenomics research, the study of how a person’s genes impact their response to certain medications. She is studying the prevalence of CEP72 risk alleles associated with vincristine toxicity in pediatric oncology patients in an effort to decrease rates of vincristine related neuropathies.
The Cancer Predisposition Program at Lurie Children’s will begin to use biorepository samples to study the whole genome of cancer predisposition patients to better understand variants that lead to cancer predisposition.
Upon donating a sample to the biorepository, your child's sample will be deidentified and coded with a unique identifier number. A variety of different tests may be conducted on the sample, including possibly genetic tests, and information will be deposited into controlled access databases, but your child's name will never be associated with the sample. Your child's sample may be sent to other multi-institutional biorepositories where it can be included in larger studies than are possible at Lurie Children’s Hospital; the sample will be labeled with a unique identifier that cannot be linked to you by any outside institutions.
Lurie Children's is committed to providing the best possible treatment to all patients, regardless of enrollment in research initiatives. Participation in the biorepository is entirely voluntary, and you can choose to stop participating in research initiatives at any time. You can request that your child's unused samples be destroyed if you no longer consent for them to be held in the biorepository by contacting us at HOTbiorepository@luriechildrens.org.
Funding from generous donors has helped to transform our cancer care. Your support is vital in helping us continue to make a difference in the lives of patients and families. Lurie Children’s relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation at email@example.com or call 312.227.7500.