The National Familial Lung Cancer Registry
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National Familial Lung Cancer Registry
The National Familial Lung Cancer Registry was established at The Johns Hopkins Medical Institutions in September 1993. The Registry was directed by Gloria M. Petersen, Ph.D. with the goals of: 1) to further our understanding of the causes of lung cancer (beyond smoking), and 2) to serve as an educational resource for persons at risk for lung cancer. Over 270 lung cancer families are registered to date. So far, research with these families includes studies of DNA repair capacity and genetic markers and their relationship to environmental factors.
If two or more people in a family have been diagnosed with lung cancer, the family is eligible to be part of the Registry. Family members and patients can refer themselves to the National Familial Lung Cancer Registry, as well as those referred by physicians. Each patient/family referred will be sent a family medical and smoking history questionnaire. In addition we will need to obtain a consent to release medical records on family members with lung cancer. This will allow us to review the medical records and pathology slides of each affected family member to confirm all cases.
Family members who have participated in our study have written letters describing how lung cancer has affected their families and the families' experience with our research study. We urge persons from families in which more than one family member has had lung cancer to register their families. Dr. Petersen has moved from Johns Hopkins to the Mayo Clinic. Anyone interested in referring a family to the Registry may wish to visit an associated Web site (The Family Lung Cancer Study), or contact Dr. Petersen at: Petersen.Gloria@mayo.edu
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