Join the MPN Research Foundation community and stay informed

Under the Microscope: our monthly e-newsletter featuring the latest in MPN research and community news
Good Marrow: our annual print magazine, mailed to members upon publication
Updates on open clinical trial enrollment opportunities
Research grant announcements for hematologists and investigators
Other timely news and resources for the MPN community

Current and future issues are shared exclusively with subscribers. We never share our member list with other organizations, and you may unsubscribe at any time.

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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:

Are you interested in learning more about our forthcoming MPN PROGRESSion Registry?

YesNo

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 (pMF): Diagnosed without a prior history of another MPNSecondary Myelofibrosis (sMF): Develops as a progression of ET or PVSecondary Acute Myeloid Leukemia (sAML): Arises as a progression of a MPNOther:Prefer not to answer

Other Diagnosis

Are you interested in learning more about MPN clinical trials?

YesNo

Would you be interested in talking with a nurse from our partner LLS, who can guide you through clinical trials and answer any questions you have?

YesNo

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 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:

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 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:

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