Educate. Empower. Impact.
Are you ready to make a real difference in MPN research and advocacy? Join our MPN Pathways: Empowered Voices in Research Training Series, a comprehensive program designed to educate, engage, and empower patients and caregivers. This series is your gateway to becoming a knowledgeable advocate who can influence and impact the future of MPN research.
PROGRAM DURATION:
July 2024 –
September 2026
FORMAT:
Live quarterly webinars & recordings on-demand
CERTIFICATION:
Certification received upon completion
Upcoming Webinar
Upcoming Session: Empowered Voices in Research
Patient Reported Outcomes and Quality of Life in MPN Patients
July 27th, 2026 4 – 5 PM CST
Meet our expert speaker – Dr. Ruben Mesa
Dr. Ruben Mesa is Senior Vice President of Advocate Health and President of the Advocate Health Cancer National Service Line, as well as Executive Director of the NCI-designated Atrium Health Wake Forest Baptist Comprehensive Cancer Center. He also serves as Vice Dean for Cancer Programs at Wake Forest University School of Medicine. A leading expert in MPNs, Dr. Mesa has led or co-led the development of six FDA-approved therapies and contributed to over 800 medical publications. His work focuses on MPN biology, innovative treatments, and improving symptom management. He is widely recognized for his contributions to cancer research, health equity, and clinical trial advancement, and is a frequent national and international speaker on MPNs.
About the session
Join us for an engaging session with Dr. Ruben Mesa exploring the lived experience of individuals with myeloproliferative neoplasms (MPNs). This discussion will highlight the real-world symptom burden and quality-of-life challenges faced by patients and caregivers, and the critical role of patient-reported outcomes (PROs) in improving care and advancing research.
Attendees will gain insight into common MPN symptoms, the importance of communicating quality-of-life concerns with care teams, and how PRO tools support more personalized, symptom-focused treatment. The session will also introduce key PRO instruments and their use in both clinical practice and the MPN PROGRESSion Registry™, helping track patient experiences and inform future research.
Key Learning Objectives:
Explore the full spectrum of quality‑of‑life challenges experienced by MPN patients and caregivers, including fatigue, pruritus, bone and abdominal discomfort, early satiety, cognitive strain, emotional burden, and the chronic nature of disease management.
Review the importance of communicating quality‑of‑life concerns with the care team, how under‑reported symptoms can influence treatment choices, and how structured conversations contribute to more personalized, symptom‑targeted care.
Gain a detailed understanding of the role and value of patient‑reported outcomes (PROs)—what they measure, how they are scored, how clinicians apply them in practice, and how they support more precise symptom monitoring over time.
Learn about key PRO instruments widely used in MPN clinical care and research, including:
• MPN‑SAF Total Symptom Score (TSS)
• EORTC QLQ‑C30
• PHQ‑9 (Modified)
• Patient Global Impression of Severity (PGI‑S)
• PROMIS Fatigue Survey
Importantly, we are highlighting these PROs because they are also actively utilized in the MPN PROGRESSion Registry™, where they help capture real‑world patient experience, monitor longitudinal symptom patterns, and inform future research questions. Connecting the session content to the registry framework will help participants understand how these tools drive both individual care and long‑term evidence generation.
Final Session Reminder
This webinar is the final session in the MPN Pathways: Empowered Voices in Research Certification Program series. We encourage all participants to attend and take a moment to confirm where they stand
in completing the program requirements. Whether you are finishing your final session or still working toward completion, now is the perfect time
to ensure you’ve viewed all webinars and submitted the required evaluations to earn your certification and be recognized for your commitment to MPN research advocacy. To view recordings and complete your certification scroll up to the webinar library and evalutation sections.
Webinar Library
Evaluations
Webinar Evaluations
Webinar evaluations will be posted here post event. Certifications will be issued after the last webinar once all evaluations been completed.
Session 1: Intro to MPN Research Foundation & MPN 101
Session 2: The Lifecycle of Drug Development
Session 3: MPN Clinical Trials 101
Session 4: FDA 101
Session 5: Patient & Caregiver Voices in Research
Session 6: Clinical Trial Protocol 101
Session 7: Informed Consent
Session 8: Patients and Caregivers’ Guide to Scientific Presentations
MPN Pathways – Schedule
Year 1 : Foundational Knowledge
Q3 2024
Speaker: Sara Douglas, MSN, RN, OCN
Intro MPN Research Foundation & MPN 101
Recording / Evaluation
Q4 2024
Speaker: Dr. Scott Weir, PharmD, PhD
The Life Cycle of Drug Development
Recording / Evaluation
Year 2 : Clinical Insights and Patient Advocacy
Q1 2025
Speaker: Christina Persaud, RN, BSN, CCRP
MPN Clinical Trials 101
Recording / Evaluation
Q2 2025
Speaker: Sarah Wicks
FDA 101
Recording / Evaluation
Q3 2025
Speaker: Patty Spears
Patients and Caregivers’ Voices in Research
Recording / Evaluation
Q4 2025
Speaker: Dr. Jane Perlmutter, PhD, MBA
Clinical Trial Protocol 101
Recording / Evaluation
Year 3 : Advanced Topics and Practical Skills
Q1 2026
Speaker: Emily Largent, JD, PhD, RN
Informed Consent
Recording / Evaluation
Q2 2026
Speakers: Drs. Amielle Moreno and Tyler Parsons
Patients and Caregivers’ Guide to Scientific Presentations
Recording / Evaluation
Q3 2026
Speaker: Dr. Mesa
Patient-Reported Outcomes and Quality of Life in MPNs
Certification Program
The MPN Pathways: Empowered Voices in Research Certification Program, made up of 9 expert-led webinar sessions, will be presented live every quarter through 2026. Participants will receive a certification upon completing the steps below, recognizing their commitment and expertise in MPN research advocacy:
WATCH – Participants must view all 9 webinars in the series to complete the program.
EVALUATE – Participants will also be required to complete an online evaluation of each webinar after they attend the session live or view the recording which will be made available within the Webinar Library.
CERTIFIED – Participants that complete all 9 webinar evaluations will receive an MPN Pathways: Empowered Voices in Research certificate via email that they can print and proudly display!
Evaluations can be accessed via email after each live session or on MPN Research Foundation’s website. Upon completing all 9 sessions and evaluations, participants will receive an MPN Pathways: Empowered Voices in Research certificate via email to print and display proudly!
Important Note: If you cannot attend the live webinars, don’t worry! All sessions will be recorded and made available to you.
Addressing your concerns
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Our quarterly webinars and on-demand modules allow you to learn at your own pace. Each session is designed to be comprehensive yet manageable.
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We break down complex topics into easy-to-understand segments, ensuring that everyone, regardless of background, can follow along and benefit.
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Every session provides actionable knowledge and resources directly applicable to your advocacy efforts. Your involvement can significantly shape the future of MPN research and treatment.