Pulmonary Biobank Initiative | Overview
Want to help researchers have a better understanding of lung disease? You can by helping the Pulmonary Biobank Initiative, a research effort by Boston Children’s Pulmonary Genetics Program. You can participate in cutting-edge research by providing various samples, including blood or saliva, when you’re seen in clinic or by a provider. Your samples will be stored in the Pulmonary Biobank’s biorepository until researchers use them to investigate respiratory conditions.
What happens if I decide to join the Pulmonary Biobank?
If you are interested in participating, you will first sit down with one of our team members for a brief consenting process. They will review the study process, answer any questions, and ask for your signature. We will ask for permission to obtain and do the following:
- access your medical records
- collect a buccal (cheek) swab
- put in an order for a blood draw
- potentially use a nasal ciliary brush to obtain a sample
- allow researchers to study your samples
You are also required to complete a survey with information about your respiratory health and history about your biological mother’s pregnancy (for example, how many weeks into the pregnancy you were born and whether your mother had any health problems during pregnancy).
How does the Pulmonary Biobank work?
The Pulmonary Biobank helps researchers better understand the biological processes and genetics behind pulmonary conditions such as asthma, bronchitis, bronchiectasis, cystic fibrosis, and interstitial lung disease.
Why join the Pulmonary Biobank at Boston Children’s Hospital?
By joining the Pulmonary Biobank, you help researchers better understand lung diseases so that better treatment options can be developed in the future. Your samples could help other patients who may have the same condition as you do.
Who can contribute to the Pulmonary Biobank?
All patients seen by a pulmonologist at Boston Children’s are eligible to participate. In some cases, relatives for patients in certain groups, or cohorts, may also contribute samples. Participation is completely voluntary, and you may withdraw at any time. There are no additional costs to participate. Your decision to participate or not participate will not impact your care at Boston Children’s.
What happens to my samples and information?
All samples are stored securely in a locked freezer that only authorized Boston Children’s staff have access to. Also, all digital health information is kept on secured databases behind a firewall that only researchers on the study protocol may access. Samples may be used for a wide array of studies including:
- identifying biomarkers that can predict clinical outcomes
- identifying genetic markers that influence health (optional)
- generating cell lines
- producing stem cells
Pulmonary Biobank Partner Projects
We partner with the PrecisionLink Biobank for Health Discovery at Boston Children’s, an initiative similar to ours. If you consent to participate in the Pulmonary Biobank and opt-in to genomics research, you also enroll in PrecisionLink Biobank. As part of this partnership, PrecisionLink Biobank may collect discarded samples from routine visits and an additional tube of blood during your next scheduled visit to phlebotomy. Participants who decide to opt-out of the genomics portion of research will not be enrolled in PrecisionLink Biobank.
How can I learn more?
If you are interested in enrolling in the Pulmonary Biobank, be sure to mention it to a team member at your next visit to the Pulmonary Clinic (Fegan 8 and 10). One of our researchers may give you more information during your visit.
If you have any questions, please contact us by emailing pulmonarybiobankinitative@childrens.harvard.edu