MPN Externally-led Patient Focused Drug Development Meeting

The MPNRF is hosting an externally-led Patient-Focused Drug Development meeting on September 16, 2019, in Hyattsville, MD. This will provide a spotlight for real people living with PV, ET and MF to educate FDA about the real experience of having and MPN in hopes of improving drug development around this group of blood cancers.

From the FDA’s website:

The Patient-Focused Drug Development (PFDD) initiative aims to more systematically obtain the patient perspective on specific diseases and their treatments. The patient perspective is critical in helping the FDA understand the context in which regulatory decisions are made for new drugs. PFDD meetings give FDA and other key stakeholders, including medical product developers, health care providers, federal partners, an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, and patients’ experiences with currently available treatments. This input can inform FDA’s decisions and oversight both during drug development and during our review of a marketing application. Click here for more.

There are examples of other meetings that have already taken place and resulting reports (https://www.fastercures.org/programs/patients-count/pfdd/). MPN community has the benefit of publications and studies already focusing on this topic. However, we believe that there will be a positive benefit to presenting all of this information in the form of a “Voice of the Patient” report that will capture relevant information pertaining to the issues they would like addressed by drug development shared by those with PV, ET, and MF.  

We are working in partnership with other advocates in the space such as MPN Advocacy and Education, International, Leukemia & Lymphoma Society, MPN Cancer Connection as well as UT-San Antonio’s Drs. Ruben Mesa and Robyn Scherber. Please stay tuned for registration information for attending in person or via the webinar.  

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