Registry provides wealth of data to help lung cancer researchers “connect the dots” and empowers patients around the world to be part of uncovering solutions
SAN CARLOS, Calif. and WASHINGTON, January 13, 2022 – To further advance lung cancer research by uncovering hidden connections between people with lung cancer around the world, GO2 for Lung Cancer (GO2 for Lung Cancer) today launched the improved and expanded Global Lung Cancer Registry. An expansion of GO2 for Lung Cancer’s national registry, the Global Lung Cancer Registry will securely gather information from lung cancer patients across the globe – providing researchers with rich data from which to identify trends that can lead to new and better treatments for people with lung cancer. Over the next year, the registry will be available in English, Spanish, simplified Chinese, German and French.
“The goal of the Global Lung Cancer Registry is to help researchers connect the dots between people with lung cancer around the world – finding hidden connections and turning them into answers to important questions,” said Laurie Fenton Ambrose, GO2 for Lung Cancer Co-founder, President & CEO. “And, importantly, the registry allows people impacted by the disease to contribute directly to global research and become a critical part of the effort to find new treatments for their own disease.”
New lung cancer therapies exist due to scientific research into the way each person’s disease works with or against treatment. From learning about gene changes to improving quality of life for those on treatment, researchers can look for links among patients in the Global Lung Cancer Registry and use that information to develop treatments and even cures.
“Lung cancer can make you feel powerless and out of control of your life, but by being part of the GO2 for Lung Cancer Global Lung Cancer Registry, I know I am not only doing something to help myself, but I could be helping other patients all across the world as well,” said Evy Schiffman, GO2 for Lung Cancer National Ambassador Council member who has been previously diagnosed with lung cancer and also served as a caregiver.
The registry is designed so patients can contribute their individual experiences with lung cancer through confidential survey questions about their medical history and diagnosis, treatment, outcomes, and quality of life. The information collected is completely secure and patients decide who can see their information, how it will be used, and if they want to be contacted by registry staff. The Lung Cancer Registry is now built on the IQVIA Connection platform. IQVIA is a leading global provider of advanced analytics, technology solutions and clinical research services to the life sciences industry, health care providers, and the patient advocacy community.
Through the registry patients can also view de-identified patient data and compare it with their own; receive information about clinical trials and registry studies; connect with researchers and health care providers; advance their understanding about lung cancer; and, use the secure registry for medical record keeping. Since patients can select their preferred language at registration or within their account setting, the registry expects to see a significant increase in global participation.
Patients can join GO2 for Lung Cancer’s Global Lung Cancer Registry by visiting lungcancerregistry.org.
The Lung Cancer Registry is supported by AstraZeneca; Bristol Myers Squibb; Genentech, a member of the Roche Group; and Novartis.
As a woman diagnosed at age 75 with non-small-cell lung cancer, I have undergone treatment since my diagnosis in late 2016 including surgery in 2017 to remove an adenocarcinoma at the bottom of my left lung. I am a non-smoker having never used any tobacco products, and an ardent exerciser. I tested at very healthy rates so when I wanted a pulmonologist’s opinion, my doctor did not believe my symptoms warranted a referral despite my requests for over a year. When finally I obtained a referral with a pulmonologist, his first comment was, “Why didn’t you come to me sooner?!”
I could hardly believe that my best friend (also a nonsmoker) who lived on the Oregon Coast would face the same denial of her symptoms from her doctor after being treated superficially for three symptoms (indicating lung cancer) and was misdiagnosed for each symptom. Only when she paid a yearly visit to her oncologist (after having experienced breast cancer 15 years earlier) was she diagnosed and immediately hospitalized. She died from her lung cancer only six weeks later. Since that time, I have met other nonsmoking women in their 60’s and up who shared similar stories with me. None had been diagnosed early; reporting their symptoms to their doctors resulted in having their observations dismissed; each was told the symptoms were due to “getting older”! How maddening! Each woman felt dismissed and betrayed and not believed by a doctor she’d trusted as well as saddened and very angry. Almost none of the cases were diagnosed until Stage IV. (Mine was already at Stage III when diagnosed.)
I received the best of care possible at that time at Oregon Health Sciences University and Hospital in Portland, Oregon and was enrolled in lung cancer research programs there which saved my life. I would definitely advise patients to participate in lung cancer research programs which are endorsed by lung cancer specialists. For some reason, the rate of nonsmoking women’s cancer cases has been rising worldwide for more than the last 5 years; the same is not true for men. Science is searching for the “whys”.
One of my biggest frustrations when searching for any information regarding lung cancer is the opening admonition to “Stop smoking!” when I never started! There is little help or advice for those of us who have engaged in healthy practices our entire lives. Instead, it’s insulting to lump us into the larger group which didn’t play by health rules. Again, it sounds as though we are not believed!
Please let me know if you have any new information regarding the “whys” of non-small-cell lung cancers and what’s happening now —-especially for older women.