The CPF's patient community, along with the other two disease communities, is piloting the crowd-sourcing, technology-enabled approach to gathering input from a diverse set of patients on key benefit-risk questions.
"The timing couldn't be better to launch this platform. As it reviews possible first drugs for the indication of IPF later this year, the
"We are pleased to be launching this program pilot with the CPF," said
Not only will the software allow patients and their families and caregivers to provide input on critical questions, the program will also allow the input of families and caregivers of deceased patients. Since the majority of IPF patients die within three years of diagnosis, it is often difficult to ascertain the full spectrum of the patient experience until after the patient is gone. Also, with the virtually 100 percent mortality in the disease, the
Background on Genetic Alliance Choice to include the CPF for IPF: After issuing a Request for Proposals,
Background on IPF: IPF is progressive and causes deadly scarring in the lungs that renders the patient breathless and debilitated. PF has no
To learn more about PF, visit www.coalitionforpf.org.
About Pulmonary Fibrosis (PF): Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis – and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 200,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF: The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The 'PF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 28,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
Teresa Barnes Coalition for Pulmonary Fibrosistbarnes@coalitionforpf.org 303-521-4080