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The MIB Testing & Research Directory is a guide to testing and research options to either help
inform a personal treatment plan and/or contribute to general osteosarcoma research.

  • Help patients and families understand the available test and research opportunities
  • Bridge the gap between researchers needing data and samples to further their research, and families who want to donate samples

PATIENTS & FAMILIES

OVERVIEW OF TEST OPTIONS
FOR PATIENTS & FAMILIES SEEKING TO INFORM A PERSONAL TREATMENT PLAN*

There are 2 main categories of testing that may provide you with personal results
that can inform clinical decision making and a personal treatment plan.

  • Tests for tumor characteristics and drivers may help identify any mutations or pathways that may be targetable with a drug, and might help prioritize a drug list for functional drug testing. However, the identified mutations may not necessarily be tumor drivers, nor have available drugs.
  • Functional drug testing may test the effectiveness of drugs on cancer cells, independent of genomic information. Data from genomic sequencing can help narrow a drug list, but is not required for functional drug testing.


When creating your plan:

  • Discuss testing options with your oncologist.
  • Ask questions before participating in a test or study.
  • Prioritize allocation of tissue samples with your oncologist and pathology department.
  • Focus on test efforts that may provide actionable results.
  • Work with your oncologist to determine a list of drugs to test.
  • Since the tumor genomic profile may mutate over time, consider testing tissue after any new relapse/resection.
*NB: Researchers have not proven that selecting a treatment regimen based on results of these tests is superior to treatment selected based on clinical experience and clinical trial results.

TESTING & RESEARCH DIRECTORY

These directories provide a sample of both commercial and research test providers.

OVERVIEW OF RESEARCH STUDIES

FOR PATIENT & FAMILIES SEEKING TO CONTRIBUTE TO GENERAL OSTEOSARCOMA LEARNING

In addition, there are also opportunities to contribute samples to improve the general knowledge about osteosarcoma,
but will not provide any data to inform a personal treatment plan.

  • Other research efforts add your anonymous tissue to a database that can be used to analyze data and patterns.
  • Prioritize tissue for tests that can inform your personal treatment plan, but consider donating any extra tissue samples to labs to further osteosarcoma research.
IMPORTANT NOTE: MIB does not independently verify information submitted to the MIB; it relies on submitters to provide information that is accurate and not misleading. MIB makes no endorsements of tests or laboratories listed in the MIB Testing & Research Directory. MIB is not a substitute for medical advice.  Patients and families with specific questions about a genetic test should contact a healthcare provider or a genetics professional.

DOCTORS & RESEARCHERS

FOR DOCTORS & RESEARCHERS SEEKING PATIENT DATA
AND SAMPLES FOR RESEARCH

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 the form below. The information will be collected in a living document by MIB and will be communicated to and made available to osteosarcoma patients and families. If you have any questions about this form, please contact tdd@mibagents.org.

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