MPN Genome Testing Survey 2019
Anonymous survey for patients with a myeloproliferative neoplasm (MPN). Purpose; to evaluate the utilization of genomic testing in MPNs.
We are a group of MPN patient advocates "The MPN Genome Study Group", working on a project called "The MPN Genome Advocacy Project (M-GAP)". We hope that this survey will help generate a broader understanding of the mutations relating to MPNs. We believe that routine genetic testing for MPN patients is needed for better diagnostic, prognostic, and treatment related decisions.
We thank you for your participation!
Less than 30 years of age
30-50 years of age
50-60 years of age
60 to 70 years of age
More than 70 years of age
3. Where do you currently live?
Australia or New Zealand
4. Current MPN Diagnosis
Essential Thrombocytosis (ET)
Polycythemia Rubra Vera (PV)
Acute Myeloid Leukemia (AML)
Undetermined or Other
5. Are you positive for;
I have not been tested/and/or/don't know answer for these mutations
6. Which medications have you tried since your current diagnosis? (check all that apply)
Watch and Wait
Interferon/ or Pegasys/ or similar
Experimental Drug/ Clinical Trial
7. If you have tried an experimental drug or clinical trial to treat your current MPN, please describe or answer with "N/A"
8. Has your doctor discussed having Genomic Testing done?
9. Do you think Genomic Testing for MPN patients is (select all that apply):
Essential to precision diagnosis
Useful for making treatment decisions
10. Have you had Genomic Testing done?
No, but I plan to in the near future
No, I don't know enough about it
No, it is not covered by my insurance
No, it isn't available in my region
No, I have decided not to have this testing done at this time
No, for other reasons
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