Copd Foundation Inc

Programs: The copd research registry is a confidential database of over 2,200 individuals with copd or at risk of developing copd who have consented to be contacted for participation in research. The registry is a great source to facilitate research since potential study candidates have already been identified who are willing to participate in copd research. The goal is to help facilitate research by creating this resource. The bronchiectasis research registry is a consolidated database of 1,974 individuals with non-cf bronchiectasis and/or nontuberculosis mycobracteria (ntm). The goal of the bronchiectasis registry is to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-cf bronchiectasis, a progressive, non-curable lung disease which afflicts thousands of patients, and ntm. The data in the registry is collected by a consortium of physicians from 14 academic medical centers across the u. S. The registry's data coordinating center is located at the university of north carolina, chapel hill.

the copd foundation, in collaboration with the concert and copdgene research networks will develop and host the copd foundation patient-powered research network (pprn). The collaboration brings together a patient-developed-and-governed patient education, advocacy, and support group with the research expertise of two federally funded research networks to establish the copd foundation pprn. The copd foundation pprn will enroll 100,000 people with copd into a registry with a scalable data hub for the sole purpose of supporting patient-driven, patient-centered outcomes research. Enrolled patients will represent the spectrum of copd disease severity - most with multiple morbidities, across diverse geographic regions, broad age and socio-economic ranges, both genders, and all racial and ethnic groups.

the copd biomarkers qualification consortium's mission is to implement the qualification of public domain biomarkers that assist in the development and registration of treatments for copd with the fda. The current members of the consortium are actively working with several academic centers, the nhlbi and the copd foundation to identify and publish key biomarkers.

other programs, which include copd360, educational programs, publications, public policy, gene study and information line.