COPD PPRN: Why you should enroll
Are you looking for a way to make a difference and let your voice be heard? The COPD Patient-Powered Research Network (COPD PPRN) is an opportunity to join a community of individuals who want to revolutionize COPD research. The COPD PPRN will be the largest network of patients affected by Chronic Obstructive Pulmonary Disease (COPD) ever assembled.
Despite being the 3rd leading cause of death, according to clinicaltrials.gov, there are only 780 ongoing trials for COPD. This pales in comparison to the over 41,000 trials taking place in cancer research.
Take charge of leading COPD research!
Enroll in the COPD PPRN
The COPD Patient-Powered Research Network will be a research registry of over 75,000 individuals with COPD who have agreed to share their health information and the impact the disease has on their lives. Operated and governed by groups of patients and their partners, the information is kept in a secure database to be used for research – ultimately leading to a deeper understanding of the disease.
It is estimated that more than 300 million individuals worldwide have COPD, but there is no resource to connect COPD researchers and people interested in participating in COPD research. By joining the COPD PPRN, you will enable this registry to serve as a clinical research resource for researchers and people who want to participate in COPD research.
Want to learn more?
Here are some frequently asked questions about the research network:
What is the COPD Patient-Powered Research Network?plus
The COPD PPRN will be a network of over 75,000 patients with COPD who have agreed to share their health information and the impact the disease has on their lives. Operated and governed by groups of patients and their partners, the information will be kept in a secure database to be used for research - ultimately leading to a deeper understanding of the disease.
Am I eligible to enroll?plus
Anyone over the age of 18 who responds "yes" to at least one of the following is eligible:
- Have either been told by a doctor that you do have COPD.
- Have a family history of respiratory disease.
- Are a current or former smoker.
- Symptomatic of respiratory disease (for example, including but not limited to coughing, shortness of breath or wheezing).
- Have had a possible or known environmental/occupational exposure that may put you at risk for a respiratory disease (environmental/occupational exposure includes but is not limited to second hand smoke, indoor and/or outdoor air pollution).
Am I automatically enrolled in studies/clinical trials?plus
No. You are not automatically enrolled in a clinical trial or a study. By joining the COPD PPRN you fill out a brief survey and will only be contacted in the future for participation in potential voluntary studies. Any clinical trials or studies you are contacted for in the future are voluntary and you do not have to participate.
Will I have to undergo any medical testing or undergo invasive medical procedures?plus
No. By enrolling you are only agreeing to share your health information.
Will I have to take new medication or change my current medication?plus
No. The COPD PPRN is not a clinical trial and no changes will be made to your treatment regimen.
Will enrollment in the COPD PPRN affect my current health insurance?plus
No. Enrollment in the research network will not affect your health insurance.
Who is sponsoring the COPD PPRN?plus
Initial funding for this project came from the Patient Centered Outcomes Research Institute (PCORI) in Washington, DC. PCORI was authorized by Congress in 2010 to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions.
Is my information secure?plus
Yes, your information will be kept in a secure database. To protect your confidentiality we will use only secure computers and secure ways of moving your information.
Do I have to enroll?plus
No. Enrollment in COPD PPRN is completely voluntary. You may withdraw at any time.
How do I get started?plus
After clicking the enroll button you will be directed to the login page. Once there, you will be asked to carefully review and sign an informed consent document and fill out a survey. Once both actions are completed, you are officially part of the COPD PPRN.
What if I have questions now or need help with the process?plus
We are here to help! You can contact the COPD Foundation at 1-866-316-COPD (2673) with any questions. For study specific questions please ask to speak with the study coordinator at the COPD Foundation at firstname.lastname@example.org.