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.
HIIPA-compliant data are collected without subject identifiers and casts are either expectorated by the subject or removed as part of therapy. Informed consent is obtained for the subject or, in the case of children, from the parent or guardian, to have demographic data and/or casts sent to this registry.
The registry is listed on clinicaltrial.gov (clinicaltrial.gov identifier: NCT01663948 ) and with the National Institutes of Health Office of Rare Diseases.
How to participate
To be able to participate in the registry, you need to provide a signed informed consent form. An 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. Informed consent is not a contract and you may withdraw from the registry at any time.
If you decide to participate in the registry, please email Melissa Yopp a copy of the signed document or fax to (804) 628-4044. After we receive the signed consent form, we will add you to the registry, send you confirmation and instructions for shipping casts to our laboratory and provide your physician with a registry link to complete.
We appreciate your support and look forward to better understanding and curing plastic bronchitis.
Our Internationl 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
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.