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Testing & Research Directory

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

Overview of Test Options

For patients & families seeking to inform 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.

Creating a Care Plan

When creating your plan:

Discuss testing options with your oncologist.
Ask questions before participating in a test or study.
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.

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

Tumor Characteristics & Potential Drivers Overview

Functional Drug Testing Overview

Tumor Characteristics & Driver Directory

Functional Drug Testing Directory

Overview of Research Studies

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.

general research opportunities

Doctors & Researchers

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.

Add my study to the directory

Resources

Genetic Testing Registry - Tests

NCBI

Genetic Testing Registry- Labs

NCBI

FFPE Specimen Instructions

Foundation Medicine

Insurance Coverage for Genetics Testing

Seattle Children’s

Points to Consider in the Clinical Application of Genomic Sequencing

ACMG

What's the difference between different genetic testing types?

Veritas

Whole Exome Sequencing - Things You Should Know

SickKids

Guide to Whole Exome Sequencing

Cincinnati Children’s

Genetic Testing: Current Approaches

NCBI

What Are Whole Exome Sequencing and Whole Genome Sequencing?

NIH

Somatic & Germline Testing

Seattle Children’s

Fact Sheets About Genomics

Talking Glossary of Genetic Terms

NIH

Genetics 101

Ambry Genetics

Participate in Research

Seattle Children's

NOTE: MIB does not independently verify information submitted to 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 & Data 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.