Idiopathic Pulmonary Fibrosis
For You. For Your Family. For the Future.We are connecting the dots. We are uncovering the causes of Idiopathic Pulmonary Fibrosis (IPF). We are creating new ways to diagnose, treat and prevent a disease that ravages lives and families. And we need your help.
If you or a family member has IPF apply to participate in our study. By donating your DNA, you’ll help us uncover the causes and find the cure.
We are connecting the dots. We are uncovering the causes of Idiopathic Pulmonary Fibrosis (IPF). We are creating new ways to diagnose, treat and prevent a disease that ravages lives and families. And we need your help.
If you or a family member has IPF apply to participate in our study. By donating your DNA, you’ll help us uncover the causes and find the cure.
What is IPF?
Idiopathic Pulmonary Fibrosis (IPF) is a lung disease that is progressive and has no cure. In many cases this disease runs in families but most often occurs in healthy individuals without a family history. Because it is rare and can run in families, it is often misdiagnosed and is diagnosed in the advanced stages. IPF limits your ability to breathe. It robs people of their ability to enjoy even simple activities like walking, eating or playing with their grandchildren. It is progressive and relentless.
We are part of an international team of scientists and physicians working to stop IPF. We have made progress in identifying its causes, but more work is needed.
What is the study?
IPF doesn’t just destroy lives, it destroys families. We have uncovered strong genetic links to IPF and are using these discoveries to develop more effective early diagnostic tests that could slow or even stop IPF.
By identifying what causes IPF, we can develop effective ways to identify IPF early, allowing us to halt its progress or even prevent it altogether. We are a passionate, driven team of researchers with the right people, the right skills and the right technologies to stop IPF. All that is missing is you. Join our study today.
How can I help?
We need your help. Just think, how do we find early disease that is undiagnosed and not manifesting any signs or symptoms? The answer is to find individuals at higher risk for IPF and screen them for early disease. At the same time, we need to collect blood samples. These higher-risk individuals are the siblings or children of those with IPF that have on or more of the high-risk genetic variants.
Therefore, if you or someone in your family has IPF, we need to study your family members to identify pre-clinical IPF.
We need a very large number of individuals for these studies – Why? First, since IPF is quite variable, large numbers of study participants are needed to account for this variation. Secondly, once we identify new genetic and diagnostic blood tests (discovery phase), the studies must be repeated in a second, different set of participants to confirm the findings (validation phase). The combination of disease variation, and the need for discovery and validation testing creates the need for large numbers of participants. Every single participant is making a contribution to our research and is advancing the knowledge of IPF.