2026 MPN Patient Unmet Needs Assessment

The assessment will take approximately 25 minutes to complete.

About this Assessment

The goal of this assessment is to better understand the current perspectives and experiences of myeloproliferative neoplasm (MPN) patients and share key insights with the broader MPN community.

Through this assessment, we aim to:

learn what services, resources, and information are known and how they’re perceived.
understand usage, accessibility, and satisfaction with existing offerings.
uncover gaps in services, resources, and information.
gauge the level of need and interest in addressing those gaps.

If you completed the 2024 assessment, your continued participation in 2026 is especially valuable. Hearing from the same individuals over time helps us understand what has changed, what has improved, and what challenges remain. This creates a clearer picture of trends, unmet needs, and the real impact of new treatments, care models, and patient support resources. Your ongoing involvement directly strengthens the quality and usefulness of this research.

Results will be shared with participants by Summer 2026. All responses are confidential. Names and email addresses are collected only to connect you with relevant opportunities.

By completing this assessment, you will be automatically subscribed to MPN Research Foundation’s mailing list to receive updates on programs, research, and more. You may unsubscribe at any time.

Your voice is vital to identifying and addressing unmet needs in the MPN community.

Questions? Email patientengagement@mpnrf.org

First Name

Last Name

Email

This assessment is intended for individuals diagnosed with an MPN. Are you an MPN patient?

YesNo

Your input is important to us

This assessment is designed specifically for individuals living with an MPN, as it focuses on capturing patient-reported experiences.
If you are not a patient but would like to share observations, concerns, or unmet needs, we invite you to contact our Patient Engagement team at patientengagement@mpnrf.org.

Demographics and patient journey

I participated in the 2024 MPN Patient and Caregiver Unmet Needs Assessment (October–December)

YesNoUnsure

Other diagnosis:

Country

State

Provinces

Gender: How do you identify?

FemaleMaleNonbinaryOther or prefer to self-describe

Self-describe:

What is your race and/or ethnicity? (Select all that apply)

Other Race/Ethnicity:

Age in years (ex. 67)

Where do you currently receive your MPN treatment and care?

An academic hospital or one affiliated with a medical school or universityA local or community hospital unaffiliated with a medical school or university BothUnsureOther

Other treatment care:

What year were you diagnosed with the first MPN? (ex. 2023)

MPN diagnosis and monitoring

I have the information and education I need about:

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree
My MPN diagnosis and risk factors.
MPN disease progression and the future of my condition.
The long-term management of my condition and the risks of future complications.
Exams and tests MPN patients undergo such as diagnostic tests, procedures, and their results

Please select the option that best reflects your experience:

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree
I feel confident in my ability to interpret test results and understand the next steps in my care.

Please select the option that best reflects your experience:

Before your MPN diagnosis, how long did you experience symptoms that were later determined to be related to your MPN?

What was the primary factor that led to your MPN diagnosis?

Routine blood work or testing no specific symptomsEvaluation of symptoms or health concernsMonitoring or follow-up of another conditionFamily history of an MPNOther please specifyNot sure

Other factors that led to an MPN diagnosis:

How long after you first reported symptoms or had abnormal lab results were you diagnosed with an MPN?

After your diagnosis, did you seek a second opinion?

YesNoPrefer not to answer

An MPN Specialist is a physician who specializes in and sees patients with primarily MPNs and other closely aligned blood cancers.

I have access to an MPN specialist.

YesNoUnsure

When did you first gain access to an MPN specialist as part of your care?

Please share any other reasons for not having access to an MPN specialist.

How far are you willing to travel to see an MPN specialist for your care?

A bone marrow biopsy is a procedure in which a small core of bone and marrow tissue is removed, usually from the back of the hip bone (pelvis), to examine cell production and bone marrow structure.

It’s often performed together with a bone marrow aspiration, which draws out the liquid portion of the marrow to study individual blood cells and genetic changes.

I had a bone marrow biopsy to confirm my MPN diagnosis.

YesNoUnsure

Allele burden refers to the proportion of DNA carrying a specific gene mutation (such as JAK2, CALR, or MPL) compared with normal (non-mutated) DNA in a sample.

For example, if you have the JAK2 V617F mutation and your allele burden is 40%, that means 40% of the JAK2 alleles detected in your blood sample carry the mutation. This does not necessarily mean 40% of your blood cells are mutated, since each cell has two copies of the gene and other genetic factors can influence the percentage.

Healthcare providers can share this number with patients if the test has been run.

I am aware of the allele burden associated with my MPN.

YesNoUnsure

Next generation sequencing or NGS testing refers to tests done from the blood or the bone marrow (biopsy) that can look for many different genetic mutations at once.

Have you received NGS testing?

YesNoUnsure

Other definitions of MPN Progression

	Strongly Disagree	Disagree	Neither Disagree nor Agree	Agree	Strongly Agree
I would benefit from a tool (application, APP, paper diary) to help track test results, symptoms, and side effects of medications.

Is there any additional information you’d like to share about your MPN diagnosis or how your condition is being monitored?

MPN therapies

Quick Facts!

There are four FDA-approved JAK inhibitors for the treatment of myelofibrosis: ruxolitinib (Jakafi), fedratinib (Inrebic), pacritinib (VONJO), and momelotinib (OJJAARA).

There are two types of interferons used for the treatment of MPNs: peginterferon alfa-2a (Pegasys) and ropeginterferon alfa-2b (BESREMi).

I understand and have the information I need surrounding:

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
The treatment options for my MPN.
MPN medication side effects and their impact on my daily life.
Complementary approaches for my MPN diagnosis such as exercise, nutrition, mindfulness, etc.
Bone marrow transplants.

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
My healthcare provider offers me the opportunity to be involved in the decisions surrounding my treatments and care.

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
I am satisfied with the current treatment options available for my MPN

What changes or new options would improve your treatment experience?

Other goal:

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
My provider considers my above goals when developing my MPN treatment and care plan.

Is there any additional information you’d like to share about MPN therapies and treatment options?

MPN clinical trials

Quick Facts!

Did you know there are over 130 trials listed currently on the National Institutes of Health (NIH) site (https://www.clinicaltrials.gov/) for MPNs?

MPN Research Foundation provides tools and resources to support patients in identifying and navigating clinical trial options: https://mpnresearchfoundation.org/mpn-clinical-trials/

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
I have the information and resources I need to find MPN clinical trials.

Looking back, my healthcare provider has discussed clinical trial options with me

YesNoUnsure

When it comes to clinical trial information, did you have to ask for it, or was it offered to you proactively by your healthcare provider?

It was offered to me proactivelyI had to ask for information about clinical trialsI asked, but my provider did not have informationI have never discussed clinical trials with my providerOther

Other:

I have participated in a clinical trial:

Yes a MPN Clinical TrialYes a clinical trial for something outside of my MPNNoUnsure

What were the reasons or barriers for not participating?

How did you hear about the clinical trial? (Select all that apply)

Clinical trial- other ways to hear about:

The following questions ask about factors that may influence your willingness to participate in a clinical trial.

For each item below, please indicate how much of a priority it is for you personally when considering whether to join a clinical trial.

After this question, you will be asked a follow-up question, you will be asked to select your top priority.

	Not a priority	Low priority	Moderate priority	High priority
Recommendation from my doctor or care team
Level of trust in the trial sponsor or researchers
Understanding the purpose and potential benefits of the trial
Clear information about risks and side effects
Confidence that my safety will be closely monitored
Possibility of accessing a new or promising treatment
Belief that participation could help other patients in the future
Location of the trial site
Ability to participate remotely or through my local clinic
Number and length of required visits or procedures
Out of pocket costs insurance coverage or compensation
My current health status
Eligibility criteria that are difficult to meet
Burden on my caregiver or family
Time commitment or disruption to daily life
Availability of clear easy to understand consent forms and materials
Prior positive or negative experiences with clinical trials
Advice or opinions from other patients
Emotional readiness or anxiety about trying an experimental treatment
Concerns about losing access to my current treatment
Privacy and confidentiality of my personal data
Whether the trial aligns with my personal values or goals of care
Concerns about invasive procedures (e.g., bone marrow biopsies, additional blood draws)

Is there any other factor not listed above that influences your willingness to participate in a clinical trial?

Is there any additional information you’d like to share about MPN clinical trials?

MPN symptoms and conditions

Quick Facts!

MPN-10 Assessment Tool:

The MPN-10 is a patient-reported outcome (PRO) questionnaire designed to help patients and providers track how MPN-related symptoms affect daily life.

It includes 10 key symptoms commonly reported by MPN patients:

Fatigue
Early satiety (feeling full quickly when eating)
Abdominal discomfort
Inactivity
Concentration problems (brain fog)
Night sweats
Itching (pruritus)
Bone pain
Fever
Unintentional weight loss

Each symptom is rated by the patient on a scale of 0 to 10, with higher scores indicating more severe symptoms. The total score helps providers assess overall symptom burden and monitor changes over time or in response to treatment.

Were you familiar with the MPN-10 Assessment Tool and the symptoms it tracks before today?

YesNo

I have used the MPN 10 Assessment Tool to assess and track my symptoms.

YesNo

Other frequency

My healthcare providers use the MPN 10 Assessment Tool to assess and track my symptoms.

YesNo

Other frequency

Other symptoms you would like to track regularly:

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
I feel comfortable discussing my symptoms and concerns openly with my healthcare provider.

Do you use any other tools other then the MPN 10 Assessment Tool to track symptoms? (phone apps, paper diary, datasheets, wearable tracking devices, etc.)

YesNo

Other MPN tracking tool:

Is there any additional information you’d like to share about MPN symptoms and related conditions?

Access to information and resources

Other social media sources:

Other MPN educational resources:

Who on your care team spends the most time with you on MPN education? (Select all that apply)

Other care team member:

A nurse navigator is a specially trained nurse whose role is to guide patients and families through the complexities of the healthcare system, particularly after a new or serious diagnosis like cancer, a chronic illness, or a rare disease.

Do you currently have someone who helps you coordinate your care or navigate the healthcare system? (select all that apply)

Other healthcare professional

Other individual that helps navigate care

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
My healthcare team provides me with education at a level that I can understand.

Other ways to receive MPN education/resources:

Have you encountered any barriers to accessing MPN-specific education or resources (e.g., cost of material, conference fees or location, digital literacy, limited print material)?

YesNo

Please share those barriers:

What MPN-related topics would you like more education or resources about?

Is there any additional information you’d like to share about access to information or resources?

Emotional health and quality of life

	Strongly Disagree	Disagree	Neither Disagree or Agree	Agree	Strongly Agree
I have the education and resources available to help me emotionally cope with my MPN diagnosis.
I feel that my emotional needs related to MPN are adequately addressed by my healthcare team.
I factor in the financial burden when determining my MPN treatment.
I have information about financial resources available to MPN patients.
I have adequate reimbursement for the treatments, tests, and care I need to manage my MPN.
My MPN diagnosis impacts my ability to work.
My MPN diagnosis impacts my ability in socializing with others.
My MPN diagnosis impacts my interest in socializing with others.
I feel that others understand what I am going through with my MPN diagnosis.
My MPN diagnosis impacts my quality of life.
I have ways I can connect with other MPN patients and caregivers.

I speak to a counselor or psychologist about my MPN diagnosis.

YesNo

Do you attend a support group for your MPN diagnosis?

YesNoNo but I would like to

Please share any details you can surrounding the support group you attend:

Is there any additional information you’d like to share about emotional health or quality of life?

Additional information

JAK2-positive	CALR-positive
MPL-positive	ASXL1-positive
Triple-negative (JAK2/CALR/MPL-negative)	Not sure
Other specify

Anagrelide	Apixaban / Eliquis
Aspirin	Bone marrow or stem cell transplant
Clinical trial	Clopidogrel
Coumadin / Warfarin	Dabigatran / Pradaxa
Danazol	Darbepoetin alfa/epoetin alfa/Aranesp
Fedratinib / Inrebic	Hydroxyurea / Hydrea
Iron	Iron chelator such as deferasirox/Exjade/Jadenu or deferiprone/Ferriprox or deferoxamine/Desferal
Lenalidomide / Revlimid	Luspatercept
Momelotinib / OJJAARA	No current treatment / watch and wait
Pacritinib / VONJO	Peginterferon alfa 2a / Pegasys
Phlebotomy or Venesection (removing blood)	Platelet transfusions
Red blood cell transfusions	Rivaroxaban / Xarelto
Ropeginterferon alfa 2b njft / BESREMi	Ruxolitinib / Jakafi
Thalidomide / Thalomid	Other specify

I have not experienced symptoms	Abdominal discomfort
Blurred or double vision	Bone pain
Changes in sexual health or intimacy	Difficulty sleeping
Dizziness Vertigo Lightheadedness	Dry eyes
Dry mouth	Fatigue
Fever greater than 100F	Filling up quickly early satiety
Flushing	Headaches
Inactivity	Itching pruritus
Joint pain	Migraines
Muscle cramping	Muscle spasms
Night sweats	Numbness tingling in hands and or feet
Pain under left rib	Persistent cough
Poor appetite	Problems with concentration
Restless leg	Tinnitus ears ringing
Unintentional weight loss in last 6 months	Weight gain
Other specify below

I have not experienced symptoms	Abdominal discomfort
Blurred or double vision	Bone pain
Difficulty sleeping	Dizziness Vertigo Lightheadedness
Dry eyes	Dry mouth
Fatigue	Fever greater than 100F
Filling up quickly early satiety	Flushing
Headaches	Inactivity
Itching pruritus	Joint pain
Migraines	Muscle cramping
Muscle spasms	Night sweats
Numbness tingling in hands and or feet	Pain under left rib
Persistent cough	Poor appetite
Problems with concentration	Restless leg
Tinnitus ears ringing	Unintentional weight loss in last 6 months
Weight gain	Other specify below

I have not experienced any conditions	Anemia low red blood cells or hemoglobin
Anxiety	Ascites fluid accumulation in the abdomen
Bleeding complications nosebleeds heavy periods gastrointestinal bleeding	Blood clots
Bruising	Decrease in quality of life
Deep vein thrombosis DVT	Depression or sad mood
Elevated cholesterol or other metabolic abnormalities	Erythrocytosis – high red blood cell count
Gout or high uric acid levels	Heart attack myocardial infarction
Hepatomegaly enlarged liver	High blood pressure
High hematocrit	Higher susceptibility to infections
Leukocytosis high white blood cell count	Leukopenia low white blood cell count
MPN disease progression	Portal vein thrombosis or Budd Chiari syndrome
Pulmonary arterial hypertension	Pulmonary embolism PE
Splenomegaly enlarged spleen	Stroke or transient ischemic attack TIA
Thrombocytopenia low platelets	Thrombocytosis high platelet count
Other specify