School of Medicine

Genetic Epidemiology of Lung Cancer 

 

WHAT is the Lung Cancer Study?

• In 1996, the Familial Lung Cancer Research Study at Louisiana State University Health Sciences Center in New Orleans (LSUHSC-NO) first began to look at the possible genes that affect the potential risks of developing lung cancer within certain families.

• In 1999, the Genetic Epidemiology of Lung Cancer Consortium (GELCC) was formally established. We have been going non-stop ever since, continuing our search to identify and understand the genes that increase the risk of developing lung cancer.

• The study's primary aim is to find and understand all of the genes that cause lung cancer, which may lead to better personalized treatments and greater treatment options. Identification of gene mutations through your participation helps to increase targeted treatment options in those diagnosed with lung cancer.

• The study will help scientists and the community understand how genes work with environmental factors in causing lung cancer. By understanding why some individuals are at a greater risk of developing lung cancer compared to others may also lead to improved preventative strategies.

• This is a long-term study funded by the National Institutes of Health (NIH).

 

WHAT information does the Lung Cancer Study collect from participating individuals?

• We collect demographic, medical, smoking, environmental, and family health history information by mail and/or phone. This information may provide insights on the many possible exposures that may be linked to lung cancer.

• You may be interviewed by one of our study's trained investigators on your family history of lung cancer and other cancers.

• A one-time only blood sample and/or saliva sample will be collected at your convenience with the kits we provide at no cost to you.

• In some cases, pathology reports and tissue samples from individuals who have been diagnosed with lung cancer will be collected upon authorization of the patient or next-of-kin.

• Participation is voluntary. You may withdraw from the study at any time. 

 

IS the information collected for this study protected?

• Yes, we are fully compliant with HIPAA (Health Insurance Portability & Accountability Act) and have received approval from the LSUHSC-NO  IRB (Institutional Review Board).

• All of the information that is collected is coded and stored in a confidential manner.

• All biological samples (blood and/or saliva) that you provide is de-identified and labeled with a unique identification number so that your information remains anonymous. You will not be identified in any way.

• To further protect your privacy, we have obtained a Certificate of Confidentiality from the National Institutes of Health (NIH). This helps us protect your privacy by allowing us to refuse releasal of your information to anyone outside of this research study, even by a court order or subpoena.

• No identifiable information will be shared with anyone outside of this study. Everything you provide will remain strictly confidential and protected.

• Results may be published in a scientific journal, but your identity will not be released.

• Your privacy is important to us.

 

WHO can participate in this study?

• Anyone diagnosed with lung cancer or anyone who has a family member that has been diagnosed with lung cancer is encouraged to CONTACT US. 

• Participants do not need to come to LSUHSC for enrollment. You can participate no matter where you live.

• All information and study materials will be provided remotely, all expenses paid by us.

• Family members may have the opportunity to participate.

• Please click here on the "STUDY PARTICIPATION FORM" link if you would like to be a participant in the study and one of our research investigators will be in touch with you soon after we receive your submission.

• You can always call us toll-free at 1-888-720-7757 for more information about the study and to see if you qualify.  

• Current or former smokers who are at least 60 years of age, have never been diagnosed with lung cancer, and do not have a family history of lung cancer can participate as a "control" (a "control" is someone with no personal or family history of lung cancer that serves as a "comparison" to those who have or had have lung cancer in order to understand risk variance for lung cancer).  If you would like to participate as a control, please contact us.

 

CAN you participate if you have been diagnosed with lung cancer but do not have a family history of lung cancer?

• Yes. Individuals who are 45 years of age or younger diagnosed with lung cancer, regardless of their family history, also have an opportunity to participate in this study.

• By participating, you may be helping to explore and possibly find any de nova mutations, or an alteration in a gene that occurs for the first time in a family, which may be important in early-onset lung cancer cases.

• We encourage anyone who has been diagnosed with lung cancer to contact us,  or complete and submit our Study Participation Form.

 

IS there any cost to participate?

• No. There are no costs to participate in the study. 

• All study-related materials and kits will be provided to you, free of charge.

• We also include pre-paid mailers to return any consent forms, questionnaires, and biological samples.

 

WHY should people participate?

• Lung cancer is the second most common form of cancer diagnosed among both men and women across all demographics in the United States, and the most common form of cancer in men worldwide. 

• Lung cancer is also the leading cause of cancer deaths in the United States, and the number one leading cause of cancer-related deaths in women in the United States.

• Some people may carry a gene(s) that increases their risk of developing lung cancer when exposed to certain environmental agents.

• The study investigators are identifying and learning about people susceptible to lung cancer in order to find information that can lead to better treatment options and diagnostic tools, making this disease less deadly in the future.

• Identifying lung cancer susceptibility genes in individuals and families can play a major role in preventing the disease before it occurs.

• Participation of more individuals and families across the United States will give us better opportunities and successes of finding the familial lung cancer genes. Through your enrollment in this study, you are helping to defeat lung cancer by helping us understand the disease better.

• Very little is known about the genetics of lung cancer, and that is why this study is so important. It is dependent on individuals and families willing to participate.  Individuals taking part in this study today will help future generations to come. 

• The study also encourages participants to gain further knowledge of their family health history. Collecting your family history can be an important tool used in assessing your risks for certain inherited diseases.   

 

WHAT happens next if I decide to participate in the Lung Cancer Study?

• You will speak with one of our study investigators regarding your decision to participate once we receive your information either by telephone (toll-free: 1-888-720-7757), email (LungCaStudy@lsuhsc.edu), or Study Participation Form.

• You will have a brief pre-screening interview to determine your eligibility to participate and enroll in this study.

• If you are found eligible and elect to proceed, the above-noted information (demographic, medical, and smoking history) and a biological sample (blood and/or saliva) will be collected from you.

• You will not be charged for your enrollment and participating will not take hours of your time.

• You may withdraw from the study at any time and for any reason.

 

HOW will participating help in the fight against lung cancer?

• Participants may not benefit directly from this study, but they will help us understand more about the genetic causes of lung cancer.

• Participation may result in a future benefit to the patient, and to their relatives, by finding the genes that increase the risk for lung cancer in some families.

• Participation in this study may contribute to the development of clinical testing for individuals at an increased risk for developing lung cancer.

• Please know that by participating, you will be helping researchers and medical professionals understand more about lung cancer, and in the long run, contributing to the development of better lung cancer diagnoses, personalized preventions, and individualized treatments.    

• Having a better understanding of the causation of lung cancer will eventually lead to more effective patient-driven treatment methods.