SAN CARLOS, Calif., Nov. 4, 2016 /PRNewswire-USNewswire/ -- The Bonnie J. Addario Lung Cancer Foundation (ALCF), the American Lung Association (ALA) and AltaVoice (formerly known as PatientCrossroads) today announced the new Lung Cancer Registry. The Registry is a place to gather and store detailed information for patients with lung cancer, which kills more Americans each year than the next three most frequent types of cancers combined.
The Registry directly involves patients in the collection of their medical information, which allows medical professionals to quickly analyze data to improve lung cancer patient care. By creating a centralized registry, patients, health-care professionals, researchers, industry and policy makers have open access to information.
"With 224,000 new lung cancer patients diagnosed in the U.S. every year, there is a dire need to improve patient outcomes and quality of life," said Bonnie J. Addario. "We are proud to partner with the ALA and AltaVoice to turn lung cancer into a chronically managed disease by the year 2023. This is a perfect time to launch The Registry, because November is Lung Cancer Awareness Month."
The Registry will provide data-driven information to:
- Support and facilitate improved disease management and standard of care.
- Assess individual patients to help determine the best line(s) of treatment.
- Evaluate the effectiveness of different treatments, products and services.
- Measure patient outcomes to assess the quality and efficacy of healthcare provided.
- Use aggregate data as a tool to find patterns (for example, by ethnicity, geographic location, sex, age, stage of diagnosis, treatment protocols, healthcare facility/clinic, etc.) that could better predict the medical future and lead to improved outcomes and quality of life for patients, both individually and as a group, over time.
"As the leading cause of cancer deaths, more must be done to address lung cancer and support those living with the disease," said ALA national president and CEO Harold P. Wimmer. "The American Lung Association funds promising lung cancer research and consistently seeks new and innovative ways to support patients. The Registry opens the door for new opportunities to collaborate with other organizations and researchers addressing lung cancer, to share data and to give patients the opportunity to engage in the conversation, ultimately expanding the impact of our collective efforts."
"The Internet makes it possible to build Patient Insights Networks that amplify the voice of patients to optimize the search for better treatments. We applaud the lung cancer community for uniting to launch a single online platform for collecting, safeguarding and sharing patient insights and medical information," said Kyle Brown, CEO of AltaVoice. "Sharing aggregated, de-identified data helps patients find the right clinical trials and reveals patterns that may hold the promise for developing new treatments and cures."
An Invitation to Patients:
Interested patients with any form or stage of lung cancer can join The Lung Cancer Registry at www.lungcancerregistry.org. There, patients can opt-in to contribute their information, set their contact preferences and compare their experience with lung cancer with others in The Registry. Patients can choose to receive information about research opportunities or other relevant news as part of their participation.
About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation's goal is to work with a diverse group of physicians, organizations, industry partners, individuals, patients, survivors, and their families to identify solutions and make timely and meaningful change and turn lung cancer into a chronically managed disease by 2023. The ALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised nearly $30 million for lung cancer research and related programs. For more information about the ALCF please visit www.lungcancerfoundation.org or follow us on Facebook or Twitter.
About the American Lung Association
The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy. The work of the American Lung Association is focused on four strategic imperatives: to defeat lung cancer; to improve the air we breathe; to reduce the burden of lung disease on individuals and their families; and to eliminate tobacco use and tobacco-related diseases. For more information about the American Lung Association, a holder of the Better Business Bureau Wise Giving Guide Seal, or to support the work it does, call 1-800-LUNGUSA (1-800-586-4872) or visit: Lung.org.
AltaVoice (formerly PatientCrossroads) is a patient-centered data company in Silicon Valley with an innovative business model that amplifies the voice of patients to optimize the search for better treatments for diseases. We build and host Patient Insights Networks (PINs). More powerful than a traditional patient registry, a PIN is a highly efficient way to build engaged communities, raise disease awareness, recruit for clinical trials, educate, and follow patients during every stage of drug development and commercialization.
AltaVoice serves as a trusted intermediary, connecting patients, advocacy organizations, clinicians, researchers and drug developers for the benefit of all. We deliver patient insights faster, and for far less, than traditional registries and CRO organizations. Since 2007, we have developed programs for more than 400 diseases through our work with over 100 advocacy groups, NIH, PCORI, biotech and pharmaceutical companies. For more information, visit http://www.altavoice.com.
SOURCE Bonnie J. Addario Lung Cancer Foundation