MIB TESTING & RESEARCH DIRECTORY Request for Patient Data & Samples
The osteosarcoma patient and family community is 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 saliva/blood/tissue 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.
Institution *
Your answer
Principal Investigator *
Your answer
Principal Investigator email address *
Your answer
Principal Investigator phone number *
Your answer
Study name *
Your answer
Study goal *
Your answer
Study description *
Your answer
What is the patient consent/assent process? *
Your answer
Are there eligibility requirements for patient participation? (check all that apply) *
If you noted eligibility restrictions, please detail here:
Your answer
Does the patient need to be seen on site in order to participate in the study? *
How specific to osteosarcoma are the project and tests that the samples will be used for? What types of abnormalities in osteosarcoma have been or can be detected through participating in this project and/or with this test? *
Your answer
What is the timeframe for use of the sample for testing and research? *
If samples are banked for future use, does the patient own and have access to the samples for other test purposes at other institutions? *
Study start date
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YYYY
Study end date
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YYYY
What certifications does the lab have? (check all that apply) *
Will the samples and test results be used for research? *
What type of sample is required? (check all that apply) *
Required
What type of patient data do you need for your study? (check all that apply) *
Required
How many patient samples are funded for your study? *
Your answer
Is there any patient cost for the participating in the study? *
If there is a patient cost, please detail:
Your answer
Is financial assistance available? *
Will the patient’s medical insurance be billed? *
Will study results be reported back to the patient to inform his/her personal treatment plan? *
How will returned results from this study impact the patient’s care directly? Please note any presentations, papers, or examples of how this study can impact care and response to treatment in osteosarcoma patients. *
Your answer
If study results will be reported to the patient, what results and deliverable can the patient expect after the study?
Your answer
Once tissue is received at the institution, what is lead time for study results to be reported back to the patient?
Your answer
What information and data about the patient, samples, and test results will be shared to others besides the patient? *
Your answer
Who will have access to the study results and patient data? *
Your answer
Once tissue is received at the institution, what is the lead time for study results to be made available to others/published?
Your answer
How will study results be made accessible? (published, shared with a larger database, accessible by online database, other?)
Your answer
If patients would like more information about participating in your study, who should they contact? If different from PI contact info, please provide name, phone and email
Your answer
Is there a website with more information about the study? If so, please provide the URL:
Your answer
THANK YOU FOR BETA TESTING THIS FORM! Please provide any feedback on the form - things to add/delete/change, flow, length, etc.
Your answer
Thank you for submitting your study! MIB will confirm when your study information has been published to MIB patients and families.
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