What is an MPN Specialist?
A Few Simple Criteria
If your doctor has never been to the ASH (American Society of Hematology) conference, the largest hematology convention in the world, and never published a peer-reviewed research paper, he or she isn’t likely to be an MPN specialist. Also, if their bio lists 12+ clinical interests, their focus is NOT likely on MPN’s. 4 to 6 clinical interests would be a reasonable amount to maintain a research study focused on myeloproliferative neoplasms. Here are some important criteria to consider:
- Past or present participation in a clinical trial is also a good indicator.
- They should stay abreast of the latest MPN research (that’s crucial), including Danish and European studies.
- Your doctor should see 50 (at least) to 500+ patients a year. If you ask your doctor, “How many PV, ET or MF patients do you treat?” and they say “3 or 4” you are not seeing an MPN specialist. That’s code for “I really see 1 or 2 patients.”
- It took me six prior doctors to find a specialist I could trust with my life, so I know the red flags to look for.
- Here are some questions to ask your doctor before a PV appointment.
Dr. Michael Grunwald (my doctor) has 7 papers this year. One thing I find interesting….his conclusion on the REVEAL study (which I participate in) is that even if your blood counts are controlled, you may continue to experience PV related symptoms – FATIGUE is still the worst one for me.
Click here for my interview with Dr. Grunwald on the REVEAL study at ASH 2017.
Here is the abstract, click the following link – Patient Reported Symptom Burden and Peripheral Blood Counts Among Patients with Polycythemia Vera (PV): An Analysis from the REVEAL Study.
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