SAN CARLOS, Calif.,
Jan. 18, 2018 /PRNewswire-USNewswire/
-- The Lung Cancer Registry sponsored by the Bonnie J. Addario
Lung Cancer Foundation (ALCF), the American Lung Association's LUNG
FORCE and the International Association for the Study of Lung
Cancer (IASLC), is joining Adam
Dicker, M.D., Ph.D. at Sidney Kimmel Cancer Center,
Thomas Jefferson University and
Heather Jim, Ph.D. at H. Lee Moffitt
Cancer Center and Research Institute, Inc., in a study to learn
about side effects of immunotherapy from patients with non-small
cell lung cancer (NSCLC) who have undergone therapy with immune
checkpoint inhibitors. In addition, the Society for Immunotherapy
of Cancer (SITC) will join the collaboration as a project partner
to maximize awareness of the registry and this research study to
both researchers and patients.
Immune checkpoint inhibitors, a form of immunotherapy, have been
shown to bring about durable remissions and prolonged survival for
patients with NSCLC, but at the cost of toxicity that causes a
range of side effects. The goal of this study is to gather
information directly from patients and caregivers to better
understand what side effects patients have experienced, when side
effect symptoms began and how side effects have impacted the
patients' quality of life. Results from the study will give doctors
a greater understanding of the how immune checkpoint inhibitor
toxicities affect patients and allow them to better inform patients
considering immunotherapy treatment for NSCLC. "Nearly a quarter
million Americans will be diagnosed with lung cancer this year,"
said Bonnie J. Addario, 14-year lung
cancer survivor and founder of the ALCF. "Immunotherapy, along with
targeted therapy, has helped transform the treatment of lung cancer
over the past decade. Gathering information from patients and
passing that knowledge on to other lung cancer patients accurately
and quickly is helping patients live longer, which is our
goal."
The study represents the first collaborative effort since the
ALCF and the Lung Association joined forces with the IASLC in
December 2017 to expand the Lung
Cancer Patient Registry. The registry allows patients to contribute
information that improves understanding of lung cancer treatments
and enables researchers to use that information to improve patient
care and outcomes.
"We're inspired by the opportunity to put the Lung Cancer
Patient Registry to innovative use," said Harold P. Wimmer, National President and CEO of
the American Lung Association. "The patient-provided data used in
this new trial will allow us to gain knowledge from patients
directly and better inform treatment."
"Patient-reported outcomes (PRO's) can help show clinical
benefit in reducing disease related symptoms, provide more accurate
estimates of toxicity, help model treatment costs and improve
symptom management," said Adam P.
Dicker, M.D., PhD, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA . "These toxicities really do
have costs, and it's important for patients to know how much
out-of-pocket costs they might incur."
Lung cancer is the leading cause of cancer-related deaths in the
U.S., accounting for one in four cancer deaths each year. The goal
behind creating the registry is to speed and improve research by
collecting information scientists can use in developing new
treatments. In addition, the registry builds a bridge between
patients and clinical trials' researchers by enabling researchers
to submit proposals to enter clinical trials into a database that
patients can search.
"When all involved in lung cancer collaborate, patient outcomes
improve," said IASLC CEO Fred R.
Hirsch, MD, PhD. "Information gathered in the study will be
available to patients, their physicians, caregivers and to
researchers evaluating the effectiveness of different treatment
options."
Patients with any form or stage of lung cancer, including
patients with NSCLC who are interested in participating in the
immunotherapy research study, can join the 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. 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) nonprofit organization
and has raised over $30 million for
lung cancer research and related programs. The foundation has
received four stars from Charity Navigator and has earned the
platinum GuideStar nonprofit seal of transparency. Follow us on
Twitter @thealcf.
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.
About International Association for the Study of Lung
Cancer
The International Association for the Study of Lung
Cancer (IASLC) is the only global organization dedicated to the
study of lung cancer. Founded in 1974, the association's membership
includes more than 6,500 lung cancer specialists in over 100
countries. IASLC members work to enhance the understanding of lung
cancer among scientists, members of the medical community and the
public. IASLC publishes the Journal of Thoracic Oncology, a
valuable resource for medical specialists and scientists who focus
on the detection, prevention, diagnosis and treatment of lung
cancer. Visit www.iaslc.org for more information and follow us on
Twitter @IASLC.
About the Society for Immunotherapy of Cancer
The
Society for Immunotherapy of Cancer (SITC) is the world's leading
member-driven organization specifically dedicated to improving
cancer patient outcomes by advancing the science and application of
cancer immunotherapy. Established in 1984, SITC, a 501(c)(3)
not-for-profit organization, serves scientists, clinicians,
academicians, patients, patient advocates, government
representatives and industry leaders from around the world. Through
in-person and online educational programs that provide
state-of-the-art continuing education for the entire cancer care
team; open access peer-reviewed guidelines, articles and other
resources; interactive, audience-specific online communities; and
by fostering collaboration between expert researchers and oncology
practitioners, SITC aims to one day make the word "cure" a reality
for cancer patients everywhere.
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SOURCE Bonnie J. Addario Lung Cancer Foundation