Join the MPNRF community and stay informed

Sign up to join our MPN Research Foundation community to receive our monthly e-newsletter, Under the Microscope, our print Newsletter, and other timely communications about what’s happening in the MPN community, including:

Research news and initiatives
Updates on clinical trials
Information sessions, webinars, and conferences
and much more!
(Hematologist/Researcher) grant opportunities as they become available

Note: We never share our member list with any other organization, and you can unsubscribe at any time.

Subscribe using the form below:

First Name

Last Name

Email address

Email Type

PersonalWork

Preferred Phone Number

Phone Number Type

PersonalWork

Address Line 1

Address Line 2

City

Country

State

Provinces

State/Province

Postal Code

Date of Birth

Gender: How do you identify?

Prefer to self-describe

Ethnicity

Hispanic or LatinoNot Hispanic or LatinoUnknown/Not Reported

Race

American Indian/Alaskan NativeAsianNative Hawaiian or Other Pacific IslanderBlack or African AmericanWhiteUnknown/Not ReportedDecline to answerOther

Other:

What languages are you fluent in? (Please select all that apply)

EnglishChinese (Mandarin)Chinese (Cantonese) FrenchGermanHindiItalianJapaneseKoreanRussianSpanish

How Did You Hear About Us?

Patient Advocacy Organization:

Other Patient Advocacy Organization, please explain:

Other, please explain:

Social Media:

I am a…

MPN Patient Family/Friend/Caregiver of a PatientMPN Patient Advocacy RepresentativeResearcherHealthcare ProviderBiopharma Industry ProfessionalGovernment Official OtherPrefer not to answer

Healthcare Provider

MPN Physician Expert at an Academic Center (An MPN Physician Expert at an academic center, who specializes in hematologic and other cancers and sees MPN patients)

MPN Physician Expert at a Community Center (An MPN Physician Expert at a community center or private practice, who specializes in hematologic and other cancers and sees MPN patients)

Hematology/Oncology Physician Academic Center (A general hematology/oncology physician at an academic center, who specializes in hematologic and other cancers in general and may see MPN patients)

Hematology/Oncology Physician Community Center (A general hematology/oncology physician at a community center or private practice, who specializes in hematologic and other cancers in general and may see MPN patients)

MPN Medical Professional (A medical team member, other than a physician, that provides care and services primarily to patients with an MPN and other closely aligned myeloid malignancy patients including physician assistants, nurse practitioners, registered nurses, phlebotomists, pharmacy personnel and other allied health professionals)

Other Physician or Medical Professional (A physician that provides care and services to patients other than in hematology or oncology. Some of these physicians may initially recognize a possible MPN diagnosis and make a referral to a heme/onc specialist)

Other Medical Professional (A medical team member, including PAs, nurse practitioners, registered nurses, phlebotomists, pharmacy personnel and other allied health professionals, that provides care and services to patients other than in hematology or oncology. Some of these professionals may initially recognize a possible MPN diagnosis and make a referral to a heme/onc specialist)

Organization/Affiliation Institution:

Title

Degree

Board Certification:

Profile Link (CV/LinkedIn)

Reseach Focus Area/technical expertise:

Other:

Patient/Family/Friend/Caregiver

What is you or your loved ones’ MPN diagnosis?

Polycythemia Vera (PV)Essential Thrombocythemia (ET)Primary myelofibrosis (MF) (primary MF is myelofibrosisSecondary myelofibrosis (MF) (secondary MF refers to the bone marrow fibrosis that sometimes forms in people who were first diagnosed with polycythemia vera or essential thrombocythemia.)Other:Prefer not to answer

Other Diagnosis

Would you be interested in participating in a patient registry at a future date?
A patient registry is a collection – for one or more purposes – of standardized information about a group of patients who share a condition or experience.

YesNoUnsure

Would you like to share more about your MPN experience/journey?

YesNoNot at this time.

MPN Patient/Caregiver Journey

Sharing additional information about your journey can help staff align you with relevant education, research opportunities, or additional ways to get involved. Your information will be kept confidential, and all answers are optional.

Year of diagnosis

Where did you/your loved one receive your/their MPN diagnosis (hospital/health system):

Where did you/your loved on receive your/their MPN treatment (hospital/health system):

Who is your or your loved one’s MPN Specialist/Hematologist/Oncologist:

What is your or your loved one’s current treatment regimen (select all that apply)?

No treatmentAspirinRuxolitnib (Jakafi)Interferon alfa (Intron A, Roferon-A, BESREMi, Pegasys)Hyroxyurea (Hydrea)Fedratinib (Inrebic)Pacritinib (VONJO)Momelotinib (OJJAARA)Darbepoetin alfa or epoetin alfaDanazolAnagrelideThalidomide (thalomid)Lenalidomide (Revlimid)Therapeutic treatments (transfusion, iron chelation, phlebotomy)Clinical TrialOther

Other treatment:

What is your or your loved one’s past treatment regimen (select all that apply)?

Same as current treatmentNo treatmentAspirinHydroxyurea (Hydrea)Ruxolitnib (Jakafi)Interferon alfa (Intron A, Roferon-A, BESREMi, Pegasys)Fedratinib (Inrebic)Pacritinib (VONJO)Momelotinib (OJJAARA)Darbepoetin alfa or epoetin alfaDanazolAnagrelideGlucocorticoidsThalidomide (Thalomid)Therapeutic treatments (transfusion, iron chelation, phlebotomy)Clinical TrialOther

Other:

What genetic mutation is associated with your or your loved one’s MPN?

JAK2MPLCALRTriple NegativeBCRABLASXL1Other

Other:

Have you or your loved on ever participated in an MPN clinical trial?

YesNoI don’t know

If Yes, please share the trial name:

Are you interested in learning more about MPN clinical trials?

YesNo

Have you or your loved on had a bone marrow transplant?

YesNo

What symptoms/conditions have you or your loved one experienced as an MPN patient? (select all that apply)

Abdominal painAbdominal discomfortFilling up quickly when you eat (early satiety)InactivityFatigueProblems with headachesProblems with concentrationDizziness/Vertigo/LightheadednessNumbness/Tingling (in hands and feet)Difficulty sleepingDepression or sad moodCoughNight sweatsItching (pruritis)Bone painFever(>100F)BruisingHigh blood pressurePulmonary Arterial Hypertension (PAH)Blood clotsStrokeAnemiaBlurred or double visionUnintentional weight loss in last 6 monthsDecrease in quality of lifeOther

Other:

Additional information you would like to share related to your MPN experience:

Want to better understand myeloproliferative neoplasms?
Read about MF, PV and ET.

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Want to better understand myeloproliferative neoplasms?Read about MF, PV and ET.

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Stay informed about MPN research & news!

Want to better understand myeloproliferative neoplasms?
Read about MF, PV and ET.