Patients Powering Research
RESEARCH OPPORTUNITIES
MIB Agents encourages patients to enroll and participate in the following research studies to power and accelerate discovery to improve treatment and outcomes for osteosarcoma patients.
RESEARCH SCIENTISTS: The osteosarcoma patient and family community are eager to contribute patient data and samples to further osteosarcoma research, discover new treatments and improve treatment outcomes. If you are working on an osteosarcoma study and are seeking patient data and/or samples, please complete this form to request to add your study here. Questions? Email christina@mibagents.org
ADD MY STUDY
About
Project: EveryChild is a program from the Rare Cancer Research Foundation that empowers people with rare cancers to donate their excess tissue or fluid from a surgery, stored tissue, and/or medical records to help researchers studying their disease.
LEarn moreWatch overviewYour Contribution
Patients consent to provide basic health and demographic information and may allow extra tissue from routine procedures to be stored for research.
Your Impact
Sharing this information and tissue helps researchers understand childhood cancers better, develop new therapies, improve outcomes, and reduce treatment side effects.
How to Enroll
Enrolment is available at participating Children’s Oncology Group (COG) institutions. Ask your child’s care team about Project:EveryChild to get started.
About
CURE ID is a free, web-based platform where patients, carers, and clinicians can share real-world experiences using existing or off-label drugs, including for rare cancers. It helps collect information where formal clinical trial data may be limited.
LEarn moreWatch overviewYour Contribution
Patients or caregivers provide basic information about the cancer, treatments tried, and outcomes through an online case report form or the CURE ID app.
Your Impact
Sharing your treatment experience helps build a database of what works—and
what doesn’t—for osteosarcoma, giving researchers and doctors the information
they need to identify promising therapies and plan future studies.
How to Enroll
Create a free account on the CURE ID website or mobile app, complete a case report form for your rare cancer, and submit it; the platform reviews submissions for privacy before use.
About
MyPART is a Natural History Study of rare solid tumors in children, adolescents, and young adults. It collects medical information, patient-reported experiences, and biological samples over time to help researchers understand how these tumours develop and respond to treatment.
LEarn moreWatch overviewYour Contribution
Patients share medical history, symptoms, quality-of-life information, and, if possible, biological samples (like blood, saliva, or tumour tissue).
Your Impact
Your data helps scientists learn how rare tumours behave, identify patterns, and design better treatments and clinical trials for future patients.
How to Enroll
Contact the MyPART team via the NCI website; participation can be remote or at the NCI Clinical Center.
About
Pattern.org is a program from the Rare Cancer Research Foundation that empowers people with rare cancers to donate their excess tissue or fluid from a surgery, stored tissue, and/or medical records to help researchers studying their disease.
LEarn moreWatch overviewYour Contribution
Patients can consent to donate their tissue (either fresh or stored) as well as their medical records from any hospital in the United States. These samples are then sent directly to research projects for their disease. Donation is no cost to the patients and does not impact ongoing care.
Your Impact
Your donation helps scientists study rare cancers by creating living tumour models that can be studied, speeding up the search for new treatments, especially for rare cancers, like osteosarcoma, for which samples are scarce.
How to Enroll
Sign up on pattern.org, complete applicable consent forms, and provide your medical and surgery details, and the pattern.org team will coordinate your tissue and medical record collection.
