Getting started
The PFF Community Registry has encouraged me to become a patient advocate in the fight against PF. It makes me feel like I am contributing as an active partner in research, because we as patients have the most to gain and the most to lose. I think researchers will find the causes of PF if they have enough data to study.
The PFF Community Registry is fostering a community of patients living with PF and ILD, lung transplant recipients who have had PF or ILD, caregivers and biological family members of
patients with PF or ILD, including those who have passed away. The
Registry's goal is to advance medical research to improve the lives of
patients with pulmonary fibrosis. Help us move toward a cure for PF and
ILD.
Be a part of the solution
The Community Registry is the first self-reported registry for all community members affected by PF or ILD. Each case and experience is unique and much about these diseases remains unknown. Knowledge is the first step in understanding how to positively help all those impacted by these diseases.
The more individuals enroll and provide ongoing data, the more answers we can find on the best way to care for patients and support their caregivers and family members. This information will ultimately help us better care for patients, including managing symptoms, improving quality of life, and more.
Who can join?
- Patients living with pulmonary fibrosis (PF) or interstitial lung disease (ILD)
- Lung transplant recipients who have had PF or ILD
- Caregivers and biological family members of patients with PF or ILD, including those who have passed away
Participation is easy – complete just two online surveys each year for a total time commitment of about two hours annually. Answer simple questions about your experience, including demographics, diagnosis, education and employment, environmental exposures, and more. Your participation in the Community Registry is vital to helping researchers find answers to better diagnose, treat and potentially cure PF and ILD.
How do I enroll?
Sign up here, and if you need help, you may watch the video demonstration below for a step by step tutorial. Participation in the PFF Registry is voluntary. Although we hope you will enjoy the sense of community and contributions you are making, you can stop participating at any time.
As a part of the PFF Community Registry, you will receive periodic research and other updates via the PFF Registry newsletter so you can see how your information is helping shape the future of PF research. The PFF Registry database is highly secure, using the same technology trusted by doctor’s offices, hospitals and clinical trials worldwide. How much information you want to share with researchers is up to you. You can decide whether or not to allow researchers to contact you for additional studies such as clinical trials.
While participating in the PFF Community Registry is completely voluntary, all participants are required to sign the consent form Before joining any study, including the PFF Community Registry, participants must sign an informed consent document to show you received and understand the information. Signing the document is not a contract. You may withdraw at any time. You will receive the consent form and will be prompted for your digital signature during the enrollment process.
I hope my participation in the PFF Community Registry can ultimately help other patients understand and plan for what their disease may bring. By filling out quality-of-life questionnaires for the Registry, I want to provide enough data points so that healthcare providers can help their patients work through their struggles.
Ken Vella
Living with PF
A diagnosis of pulmonary fibrosis affects not only patients but also our family members and loved ones. The PFF Community Registry is important because pulmonary fibrosis is a new disease compared to other lung diseases that get more attention. I hope researchers and companies will use the Registry to make life easier for all of us.
Valeria Hatcher
Living with PF
If we have more data on the Registry, it becomes more reliable and more dependable. Researchers will be able to draw better conclusions about this disease.
PJ Kamani
Living with PF
Download flyers
Looking for flyers for your support group or doctor's office? Download unique flyers below! Each document is 8.5" x 11" and will fit on standard printing paper.