About the Osteosarcoma Project

‍Our partners at @Count Me In are looking to engage anyone in the United States or Canada who has ever been diagnosed with osteosarcoma.  Parents of children who have received an OS diagnosis are also able to sign up for the study on their child’s behalf. After signing a required consent form, participation takes about an hour, and includes optional aspects such as completing a medical release form, responding to surveys, and providing saliva and/or blood samples to the study.  

The OSProject has some exciting updates to share. Learn more about the initiative below and visit OSProject.org for more information.

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How did the idea come about to create the Osteosarcoma Project?

Since the launch of our first project in 2015, all of Count Me In’s projects have been built with the understanding that patients have the power to advance cancer research in a way that no one else can. Patients’ medical records, tumor samples, and personal experiences hold clues—about which cancers will respond or become resistant to which therapies — that often can’t be found in research labs or clinical trials. Patient-partnered research like this is uncommon in many research settings today, but Count Me In believes in the importance of involving patients in all aspects of a study’s design including concept, goals, messaging, forms, and the website.

As our organization continued to grow, we received feedback from patients, advocates, researchers, and community members that there was a need for this type of research in osteosarcoma, especially given how rare the disease is, and how many children it affects. We believed that our research model could potentially fill some gaps in the overall landscape of osteosarcoma research, and the OSproject was officially launched at the FACTOR conference in February of 2020.

How can patients participate?

Anyone who has ever received a diagnosis of osteosarcoma in the United States and Canada can join the OSproject by going to https://www.OSproject.org, and clicking the “Count Me In” Button in the upper right corner. After answering a few quick questions to ensure that they are eligible for the study, participants will be able to create an account and complete the following steps:

1. ‍ Provide consent: The consent form is how participants give researchers their permission to take part in the study. It will also allow people to elect to share samples of saliva, blood, and/or tissue, as well as copies of their medical records. This document is several pages, but we encourage participants to take their time and reach out to the project team with any questions.‍
2. Tell us where you’ve been treated: We ask where participants have been treated, so that we can request medical records, and if applicable, archived tumor tissue.‍
3. Respond to surveys: In these surveys, we ask questions about a participant’s experience with OS, like when they were diagnosed and the types of treatments they've had. Participants may also be contacted by the team to participate in focus groups or additional surveys about their experiences participating in the project.‍
4. Provide a saliva and/or blood sample: We will send participants a kit to collect a sample of their saliva and/or blood, along with easy-to-follow instructions. We will study these samples to help improve our understanding of cancer by comparing the normal DNA in a participant's saliva or blood to their tumor DNA from any tumor samples we may collect.

Do patients have access to any of the data about their samples?

As of September 2022, the OSproject offers some optional opportunities to become more involved that may be of interest to participants looking to learn more about the samples they provide.

1. Receive information about what we’ve learned from your tumor sample (optional): If a participant elects to share archive tissue samples with the project, we may be able to share information from the genomic sequencing of the tumor sample back with the participant. This information is intended to highlight how participant sample(s) are contributing to research and will not have implications for their treatment or prognosis. Because of regulatory restrictions, we are unable to share results with participants living in or samples resulting from New York and Canada.
2. Learn more about your normal DNA (optional): The project is also partnering with Invitae in order to sequence and share information on germline DNA (or “normal” DNA) from saliva samples. During the project, participants will be able to decide if they would like to provide an additional saliva sample to learn more about their normal DNA and speak with a genetic counselor to understand these results. If a participant chooses not to participate in this process, their data will not be shared with Invitae. This process is not available for participants in Canada, as Invitae is not licensed to provide genetic counseling services there.

How does the Osteosarcoma Project release data, and how does this relate to other osteosarcoma big-data projects like CCDI, Project:Everychild, and the Pediatric Cancer Data Commons?

When participants take part in the various aspects of the OSproject, we receive valuable information from their survey responses, medical records, and biological samples (such as tumor, blood, and saliva). With all this information that participants generously contribute to the project, our study team will create datasets that contain linked clinical, genomic, molecular, and patient-reported data, without including any personal information. These datasets will then be regularly shared with the biomedical research community through scientific repositories such as cBioPortal for Cancer Genomics and the National Cancer Institute (NCI) Genomic Data Commons.

The data that we release will allow researchers to analyze many different aspects of how osteosarcoma works, and ultimately speed the pace at which discoveries are made. We hope that our data will add to the valuable information and resources that are currently available through other big-data projects in the osteosarcoma space.

What is the difference between sending tissue to a company like Foundation Medicine versus the Osteosarcoma Project? Does it make sense to send tissue to both?

The goal of the OSproject is to transform cancer care by enabling all patients who have ever been diagnosed with osteosarcoma to accelerate biomedical research through sharing their cancer samples, clinical information, and their experiences. We hope that the data we generate will be useful to researchers who are asking many different types of questions about osteosarcoma, and that any discoveries that are made as a result of the OSproject data will benefit the entire osteosarcoma community.

There are many companies that focus on providing patients with individualized, clinically actionable information about the samples and information they provide. This is also extremely valuable information, but the OSproject is a research project that is focused on answering larger-scale questions, which will not impact an individual’s specific treatment plan. Thus, if a patient is willing to provide access to tumor samples to the OSproject as well as other companies, it makes sense to do so. The OSproject will also make sure that any tissue we request will not interfere with a participant’s clinical care.

Can bereaved caregivers participate on behalf of their loved ones who have passed?

Unfortunately, due to regulatory restrictions, the OSproject is not able to allow bereaved caregivers to provide consent on behalf of a loved one who has passed.

However, if you have lost a child to osteosarcoma, you can go to https://www.OSproject.org, click "Count Me In" in the upper right corner, and there will be an option to indicate that your child has passed away. This will lead to a survey that will ask questions about your child’s experience with osteosarcoma. Responses to this survey will give researchers unique insights into this cancer and have the power to inform future directions for studies in this rare cancer.

We will provide regular updates as the study progresses about the status of the project and information about new studies that we are conducting. We will also share any discoveries from these research projects with parents who have filled out this survey.