Count Me In launches Osteosarcoma Project
February 28, 2020
Patient-partnered initiative will enable anyone in the
USA and Canada affected by osteosarcoma to participate
Count Me In has launched the Osteosarcoma Project (OSproject.org), a
patient-partnered effort that enables people in the USA and Canada who have
been affected by osteosarcoma to accelerate research.
The OSproject will partner with patients and
parents/guardians through social media and advocacy groups in order to generate
data that represents the spectrum of people affected by this disease.
De-identified genomic, clinical, and patient-reported data from the project
will be made freely available to the global biomedical community.
Count Me In is a 501(c)3 nonprofit research
initiative on a mission to make every patient's experience count in the effort
to understand and overcome cancer. Founded in 2018 by Emerson Collective, Broad Institute of MIT and Harvard, and Dana-Farber Cancer Institute, Count
Me In engages and empowers patients to participate in cancer research by
donating medical records, genomic data, and tumor samples for study.
Osteosarcoma is the most common malignant primary bone tumor
and yet it is a rare disease, with approximately 800 to 900 new cases per year
in the United States, according
to statistics from the American Cancer Society. The ten-year overall
survival rate of 60% has not changed in over 30 years, and treatment options
used for osteosarcoma are associated with significant toxicity and long-term
side effects. Insights leading to new approaches have been limited, and many
key questions need to be answered in order to better understand this disease.
Osteosarcoma primarily impacts adolescents and young adults
ages 10 to 30. The OSproject will be the first Count Me In project to
enroll pediatric patients and will enable patients of any age to join.
“Collaboration between patients, medical professionals, and researchers is
paramount to those who have and will suffer from osteosarcoma as we seek to
provide better outcomes,” said Ryan Kennington, Project Advisory Council
Easy to enroll, built with patients
Patients of any age diagnosed with osteosarcoma can join the
project. To participate, patients first fill out an online research consent
form, which asks for permission to collect samples and to request copies of
their medical records. After completing the consent, patients have the option
to complete a survey covering demographic information and cancer history.
The study team takes it from there, obtaining copies of
medical records and samples so that researchers can compare the patient’s
genetic information with tumor DNA, linking that information with the patient’s
clinical story. Individuals who have lost their child or a loved one to
osteosarcoma can complete a survey to describe their loved one’s experience
with osteosarcoma, giving researchers unique insights into this cancer and the
power to inform future directions.
The project will generate de-identified genomic, clinical,
and patient-reported data that will be shared as a comprehensive dataset with
the entire research community in order to accelerate the development of future
therapies. The data will be made available to researchers globally via
scientific web portals so that they can access and learn from it, and as a
result, fuel their research programs and accelerate discoveries in cancer
research. The team will release new batches of data on a regular basis.
The OSproject was built with input from patients,
caregivers, clinicians, and scientists in the osteosarcoma community.
All Count Me In projects share a core commitment of
partnering closely with patients to speed both drug discovery and biological
understanding of cancer. “The OSproject puts the power to effect change in
osteosarcoma in the patient’s hands - our hands! This project allows us an
impactful way to inform research, thus improving our chances for kinder
treatments and ultimately greater hope for more survivors of this disease,”
said Ann Graham, Project Advisory Council member.
The OSproject is proud to have Because of Daniel, MIB Agents, The Osteosarcoma
Collaborative, the QuadW Foundation, the Zach Sobiech
Osteosarcoma Fund, and Target Cancer Foundation
as advocacy partners.
Input from scientists and clinicians was gathered to create
surveys that will enable the OSproject to better understand patients’
experience with osteosarcoma. “As an oncologist who treats patients with
osteosarcoma and a researcher who studies osteosarcoma, I am excited to see the
OSproject launch,” said Katherine Janeway, MD, MMSc, Associate Professor of
Pediatrics at Harvard Medical School, Senior Physician at Dana-Farber/Boston
Children's Cancer and Blood Disorders Center, Director of Clinical Genomics at
Dana-Farber Cancer Institute, and a member of the OSproject's Scientific
Advisory Council. “It is just the type of osteosarcoma community engagement
needed to drive science and treatment forward.”
To learn more, visit JoinCountMeIn.org.