The Bonnie J. Addario Lung Cancer Foundation (ALCF), the American Lung Association (ALA) and AltaVoice — formerly known as PatientCrossroads — recently announced the start of a joint Lung Cancer Registry to gather detailed information about, and for, patients with lung cancer, and to make it easier for them to participate in clinical trials of new treatments.
The launch was made in November, Lung Cancer Awareness Month, and people with any form or stage of lung cancer are invited to participate. Data collected will be stripped of information that might identify a specific patient.
AltaVoice will help to ensure that patients are directly involved. The data company built and hosts Patient Insight Networks (PINs) — a form of enhanced data registry that engages communities, raises disease awareness, recruits for clinical trials, and educates and follows patients through each stage of drug development.
“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, AltaVoice’s chief executive officer, in a press release. “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.”
A centralized registry of cancer information open to researchers, healthcare professionals, industry and policy makers, and patients alike will, the groups said:
- support improvements in disease management and standard of care
- be a source of information to help define the best line of treatment for individual patients and evaluate outcomes
- help to evaluate the efficacy of different treatments, products and services
- serve as an aggregate data tool to find patterns in various factors —like ethnicity, geographic location, age, healthcare facility, or disease stage — that could might improve care.
“As the leading cause of cancer deaths, more must be done to address lung cancer and support those living with the disease,” said Harold P. Wimmer, ALA’s national president and chief executive officer. “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.”
Patients can either join the Lung Cancer Registry by going to lungcancerregistry.org and agreeing to contribute their information. All registry participants can decide the degree of contact they want, and choose to compare experiences with other lung cancer patients there. They also can choose to receive information about research opportunities or other relevant news.
“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, chair of the foundation that carries her name and lung cancer survivor. “We are proud to partner with the ALA and AltaVoice to turn lung cancer into a chronically managed disease by the year 2023.”
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