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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

Jane Headshot

Upcoming Session: Clinical Trial Protocol 101
November 20th, 2025
5 – 6 PM CST
 

Meet our expert speaker – Jane Perlmutter, Ph.D., MBA

Jane Perlmutter is a long-term survivor of multiple cancers and a dedicated advocate whose work is shaped by her personal experiences, formal training in cognitive psychology (Ph.D.), computer and information science (MS), and business (MBA), as well as a career spanning academia, non-profit R&D, corporate leadership, and consulting. Early in her advocacy, she served as a peer counselor and board member for Y-ME, and as a grant reviewer for ACS, CDMRP, and PCORI. She has contributed to research from early translational studies to real-world data projects, with a current focus on clinical trials—ensuring the patient voice guides research priorities and protocols, and championing innovative trial designs that accelerate access to new treatments. She serves as lead advocate for the I-SPY2 and TAPUR Master Protocol trials and is a long-standing member of the Alliance for Clinical Trials in Oncology, as well as ASCO, National Academy of Medicine, and NCI committees. Beyond cancer, Jane works with numerous government and non-profit organizations, including as past chair of PCORI’s Patient Engagement Advisory Panel, a member of its Clinical Trials Advisory Committee, and a steering committee member for the Clinical Trials Transformation Initiative (CTTI). Passionate about developing future advocates and fostering collaboration with researchers, she has delivered training for many advocacy groups and served on the faculty of the ASCO/AACR Methods in Clinical Research Workshop and SITC’s SCION workshop. Her leadership has been recognized with the AACR Distinguished Public Service Award and ASCO’s Patient Advocate Award, both in 2023.

   Key Learning Objectives: 

  

  • Learn what a protocol is and why it is necessary
  • Review the different sections of a protocol

 

 

  • Learn what to look for in a protocol from a patient/caregiver perspective
  •  Learn how patients can provide feedback during protocol development/review 

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
Registration / Evaluation

Year 3 : Advanced Topics and Practical Skills

Q1 2026
Speaker: TBD
Informed Consent

Q2 2026
Speaker: TBD
A Patient’s Guide to Scientific Presentations

Q3 2026
Speaker: TBD
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: 

  1. WATCH – Participants must view all 9 webinars in the series to complete the program.
  2. 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.
  3. 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

Time commitment
Our quarterly webinars and on-demand modules allow you to learn at your own pace. Each session is designed to be comprehensive yet manageable.
Content complexity
We break down complex topics into easy-to-understand segments, ensuring that everyone, regardless of background, can follow along and benefit.
Impact & Relevance
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.
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