Familial Pulmonary Fibrosis (FPF) Genetic Counseling Program

1.800.423.8891 ext. 1097 or email Janet Talbert at talbertj@njhealth.org.

Pulmonary fibrosis is a disease characterized by progressive scarring of the lungs, which robs patients of the ability to breathe. Most cases are of unknown cause, and are called Idiopathic Pulmonary Fibrosis or IPF.  An estimated 10-20% of patients with IPF have a form of the disease that runs in families, called familial pulmonary fibrosis (FPF). Research has identified several genes that are associated with familial pulmonary fibrosis, however these genes explain about 20-25% of those with the Familial form of IPF and even less for those with no family history (sporadic).  Genetic testing, while available for most of the genes discovered to date, is not strongly recommended as there is currently poor clinical utility (what to do with the information) for patients with FPF.  However, due to the availability of genetic testing and concerns of the disease running in families,  patients and family members should discuss the risks and benefits of genetic testing, risks to others in the family and important issues (such as insurance discrimination) with a genetic counselor.

National Jewish Health collaborates with the Pulmonary Fibrosis Foundation to provide genetic counseling for both sporadic and familial pulmonary fibrosis patients, their families, their healthcare providers, and to the pulmonary fibrosis community at large.  Learn more about the genetic counseling program.

 

Related Programs


Clinical Trials

A Linkage and Association Study in Pulmonary Fibrosis

The purpose of this study is to investigate inherited genetic factors that play a role in the development of familial pulmonary fibrosis and to identify a group of genes that predispose individuals to develop pulmonary fibrosis.

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Reasons to Visit National Jewish Health

  • The leading respiratory hospital in the nation and the only one devoted fully to the treatment of respiratory and related illnesses
  • Ranked as one of the top two hospitals in pulmonology every year since U.S. News & World Report included this category in its annual “Best Hospitals” survey
  • Ranked in the top 1 percent of hospitals in the nation by HCAHPS
  • Physicians frequently recognized as among the best in the nation by multiple services, including Best Doctors in America and Castle Connolly
  • Among the top 8 percent of organizations funded for research by the NIH, providing patients access to the latest clinical trials
  • 118-year history of focus on care, research and education serving thousands of patients with lung, heart, immune and related disorders

 

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