The Pulmonary Research Registry (PURR) is a database which is designed to facilitate patient selection and enrollment into research studies at the Firestone Institute for Respiratory Health (FIRH). All FIRH patients can sign up for PURR on a voluntary basis. Their family & friends, staff, essentially everyone without a respiratory condition, is also welcome to participate as "healthy volunteers". That way, when a new study is launched, we can match up the group of patients with a group of healthy people, to compare research findings.
By signing up for PURR, you do not yet consent to take part in a specific research study. With your consent to be part of the PURR database, you give us permission to keep your health and contact information in the database. We can then contact you in the future if a study is upcoming you might qualify for. Once you learned all the details about a study, you can decide whether or not you wish to participate. Confidentiality is ensured, and your contact can be removed from the database at any time.
Your enrollment with PURR is very helpful for researchers and clinicians to learn more about respiratory diseases. We depend on research volunteers taking part in our studies, in order to understand better why and how lung diseases develop. Some studies include the testing of a new medication. Others consist of a questionnaire, a breathing test or collection of a blood sample. With the knowledge we gain from these studies, better treatments might become available in the future to you, your relatives and other patients.