The Power of Data: Every lung cancer patient’s experience can contribute to groundbreaking research and breakthrough discoveries, leading to personalized treatments and better outcomes. This is the power of a lung cancer registry.
What is a Lung Cancer Registry?
Lung cancer registries collect extensive, real-world data, including demographics, treatment outcomes, and genetic profiles such as RET mutations. Researchers use this wealth of information to identify patterns, explore risk factors, and develop targeted therapies. Registries provide a foundation for large-scale studies that might otherwise be impossible to conduct.
Patient data helps researchers identify which types of cancer respond best to specific treatments. Scientists can uncover links between genetic mutations and treatment outcomes. This approach helps tailor treatments to individual lung cancer patients based on their cancer’s unique molecular profile. For example, survival data linked to targeted therapies and immunotherapies has provided insights into their real-world effectiveness.
Types of Registries
National Registries: These are large-scale databases maintained by governments or national organizations. They collect information from across the country, providing a broad picture of lung cancer trends, survival rates, and treatment efficacy. A national program for developing a comprehensive surveillance system for lung cancer in Iran, for example, emphasizes the importance of systematic and targeted data collection to inform health system planning and disease management. An example of a national registry in the U.S. is the National Cancer Institute’s SEER program. Lung cancer patients do not directly participate in SEER but can contribute by agreeing to allow their healthcare providers to share their anonymized health information with cancer registries.
Regional Registries: These focus on specific geographic areas, such as a state or province. Regional registries allow for the study of localized patterns, such as environmental factors or healthcare disparities that might affect outcomes in that area.
Specialized Registries: These registries target specific types of lung cancer or patient groups, such as those with RET-positive lung cancer. Specialized registries are critical for advancing precision medicine, as they provide rich data for studying rare genetic mutations or unique patient populations.
Participating in a Lung Cancer Registry Contributes to Research Advancements
Registry participation contributes to research and improves care by providing valuable data that fuels studies to enable new therapies and better treatments. By participating, lung cancer patients can contribute to a collective effort that fosters a supportive community.
Connecting with Others
Beyond research and medical care, registries often serve as a gateway to patient support networks. Many registries collaborate with organizations that connect patients with others facing similar challenges, creating a space to share experiences and provide emotional support. Registries help build a united community where patients, families, and advocates work together to drive progress.
Confidentiality and Data Protection in Lung Cancer Registries
When it comes to lung cancer registries, confidentiality and data protection are of paramount importance. Registries collect sensitive information, including medical history, personalized treatment details, and genetic data, making it essential to ensure that the data is secure and confidential.
Lung cancer registries employ a variety of measures to protect patient data. This includes encryption, secure servers, and strict access controls to prevent unauthorized access. Patients can feel confident that their information will be kept confidential and used solely for research purposes.
Researchers accessing data from these lung cancer registries are required to sign confidentiality agreements and adhere to rigorous data protection protocols. Additionally, lung cancer registries comply with relevant data protection regulations, such as the Health Insurance Portability and Accountability Act (HIPAA), which ensures patient data is handled with the utmost care and security.
By participating in a lung cancer registry, patients not only contribute to vital research but can also rest assured that their personal information is protected and used responsibly.
Get Involved, Join a Lung Cancer Registry Today
Joining a lung cancer registry contributes to a comprehensive RET database system. By participating, you’re part of organized efforts to monitor disease prevalence, inform the medical community, contribute to breakthrough discoveries, guide clinical decision-making, and improve personalized treatment options for RET lung cancer patients.
Learn MoreCurrent RET Lung Cancer Registries
Currently, there is a limited sample of RET-positive lung cancer patient data. But, you can help! There are several registries that collect patient data for researchers to access and study:
GO2 Lung Cancer Registry
The Lung Cancer Registry, created by GO2 for Lung Cancer, is a global online database that was launched in 2016.
Any person older than age 18 who is diagnosed or at risk for lung cancer, regardless of stage of disease or type of lung cancer, or a caregiver of a person with lung cancer (living or deceased) can participate in the Lung Cancer Registry.
Data can be input directly in the Lung Cancer Registry by a patient or survivor of lung cancer, or by a caregiver who has been granted access to the patient’s medical records, such as a spouse, child, relative, or friend.
Lung Cancer Genetics Study
The focus of the Lung Cancer Genetics Study is to better understand the genetics of people with lung cancer in order to improve detection, risk reduction, and care. The de-identified data from the study will be made available to approved researchers, and access to the scientific database will be available to nonprofit researchers and institutions at no cost.
The 23andMe research platform will enable consented participants to come together to provide critical data for scientists studying lung cancer. Research data will include genetic information and self-reported information about each participant’s unique experiences (using responses from online surveys), as well as additional data sources such as medical records and tumor biomarker information.
The goal of the study is to recruit 10,000 people who have been diagnosed with lung cancer, with no restrictions on the type of lung cancer, stage of disease, gender, smoking status, biomarker, or other variables. The study is recruiting individuals who are 18 years or older, live in the United States, and have been diagnosed with lung cancer. Participants in the study can receive the 23andMe kits at no cost.
The Happy Lungs Project is one of 20+ lung cancer advocacy organizations collaborating with 23andMe on the Lung Cancer Genetics Study in an effort to help advance research toward finding a cure for lung cancer.
More info here: https://happylungsproject.org/hlp-joins-23andme-to-launch-lung-cancer-genetics-study-to-advance-research/
Epidemiology of Young Lung Cancer Study
Epidemiology of Young Lung Cancer is a clinical study for patients who were diagnosed with NSCLC before the age of 50 to investigate why an increasing number of young people are developing lung cancer. Investigators aim to study potential environmental and childhood exposures, lung cancer diagnosis by age, and other risk factors for lung cancer in persons under age 50. The study also aims to understand the differences between lung cancer in young and old patients including the presence of genetic mutations.
Eligible patients will be asked to fill out a confidential, online survey capturing information about demographics, medical history, active and passive smoking history, early life exposures, and more. Participants will also be asked to provide a small sample of blood, which can conveniently be collected at their home or through their provider.
Lung cancer is not only a smoker’s disease, and there is increasing evidence that many young patients with NSCLC have never smoked; as well, this cancer type is more predominant in women. RET cancer patients are needed to understand the epidemiology and potential causes of the disease.
This innovative lung cancer study is co-led by Dr. Jorge J. Nieva, associate professor of clinical medicine at the University of Southern California’s Keck School of Medicine in Los Angeles and sponsored by the Addario Lung Cancer Medical Institute (ALCMI) in collaboration with the GO2 Foundation for Lung Cancer.
RETgistry
Consider talking to your doctor about giving consent to participate in the RETgistry, a global consortium for the study of resistance to RET inhibition in RET-altered solid tumors through Massachusetts General Hospital and Memorial Sloan Kettering Cancer Center.
Resources & References
https://lungcancerregistry.org/what-to-expect/
https://ascopubs.org/doi/10.1200/JCO.2023.41.16_suppl.9065
https://go2.org/research/our-research-studies/epidemiology-of-young-lung-cancer/
Also check out: RET clinical trials, health care providers, more personalized treatment, new and better treatments, breakthrough discoveries, other cancers, patient care, leading cause
