International Plastic Bronchitis Registry
Most reports of the severe airway disease called plastic bronchitis are single-case reports, making it difficult to understand the disease’s natural history, disease associations and response to therapy. We have established the International Plastic Bronchitis Registry, which contains clinical and demographic data on patients with plastic bronchitis along with, in many cases, their expectorated airways casts. This research has led to new understanding of related disorders, specifically near-fatal asthma.
Patients: How to Participate
To be able to participate in the International Plastic Bronchitis Registry, you need to sign an informed consent form. Informed consent is a process to help you understand the registry in detail, including its purpose, the information we collect, and how we plan to use and protect your information. Please review and sign the informed consent online, via this link. We also encourage you to review the Frequently Asked Questions document.
After we receive the signed consent form, we will add you to the registry, provide you or your physician with a registry link to submit information, and provide instructions for shipping casts to our laboratory.
If you have questions about the registry, please contact Michael Davis, RRT, PhD at 804-628-2793 or firstname.lastname@example.org.
We appreciate your support and look forward to better understanding and curing plastic bronchitis.
Researchers: Available Plastic Bronchitis Casts
This section will be updated soon.
The International Plastic Bronchitis Registry is listed on ClinicalTrials.gov (identifier: NCT01663948) and with the National Institutes of Health Office of Rare Diseases.
The International Plastic Bronchitis Registry is a member of the GRDR program. Our de-identified data integration into GRDR will allow query by investigators to accelerate research across many rare diseases, that eventually may lead to the development of novel diagnostics and therapeutics for patient benefit.
The Plastic Bronchitis Foundation
Mission Statement: The Plastic Bronchitis Foundation is a program to raise awareness of the rare disease Plastic Bronchitis; promote education, fund research, and to aid and assist the patients and their families with expenses occurred with the travel for treatment of Plastic Bronchitis.