CurePSP Externally-Led Patient-Focused Drug Development Meeting

On February 6, 2026 from 10am until 3pm ET, CurePSP hosted a virtual Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on progressive supranuclear palsy (PSP). EL-PFDD meetings offer a key opportunity for the U.S. Food and Drug Administration (FDA), product developers, and other stakeholders to hear directly from people impacted by PSP.

Please see below for Frequently Asked Questions. Click here for additional information and FAQs on Patient-Focused Drug Development and EL-PFDD meetings.

What is Patient-Focused Drug Development?

Patient-Focused Drug Development (PFDD) is a systematic approach to help ensure that patients’ experiences, perspectives, needs and priorities are captured and meaningfully incorporated into drug development and evaluation.

For more information about the FDA Patient-Focused Drug Development initiative, click here.

What is an Externally-Led Patient-Focused Drug Development meeting?

An EL-PFDD meeting is a special meeting hosted by patient organizations to provide  the FDA, product developers and researchers at pharmaceutical companies and universities, and clinicians an opportunity to hear directly from people living with a particular disease and those who care for them.

Click here to learn more about EL-PFDD meetings.

What topics were covered during the meeting?

The EL-PFDD meeting focused on two primary topics:

• The patient (and caregiver) lived experience, with a focus on how the disease impacts your day-to-day life.

• Patient (and caregiver) thoughts about current treatment options and their hopes/fears related to the treatment horizon.

The EL-PFDD meeting hosted by CurePSP focused exclusively on progressive supranuclear palsy (PSP).

Who attended the meeting?

The key participants in PFDD meetings are those impacted by PSP, including those diagnosed and care partners. While people impacted by PSP share their perspectives, key stakeholders are in listening mode as part of the audience, including the FDA. Additional stakeholders may include:

• Other regulatory/federal agencies

• Medical product developers

• Academic researchers

• Clinicians and healthcare professionals

It is important for all these stakeholders to hear patient input as it may inform drug development. Aside from providing initial remarks from the FDA perspective, FDA staff participate as listeners in EL-PFDD meetings.

What happened during the meeting?

PFDD meetings follow a town hall style discussion format. The majority of the meeting was dedicated to hearing from people with PSP and care partners about their perspectives on their condition.

Participants were asked to share their perspectives during two panels followed by open discussion.

The first panel focused on the symptoms and daily impacts of the condition, while the second panel focused on the current treatment approaches and what participants would look for in an ideal treatment. 

Each topic started with a panel of patients and care partners who each spoke for a few minutes at a time to share their experiences and help set the tone for the rest of the discussion. Following each panel, the discussion was open to all patients and care partners in the audience. The goal was to hear a diverse range of perspectives from people living with the condition.

How can the community participate?

The goal of an EL-PFDD meeting is for patient and care partner’s lived experience to be documented and shared with the FDA, medical product developers, academic researchers, and clinicians. During the virtual meeting, there will be a toll-free number to call and share your experiences.

In addition, written comments will be welcome during the meeting and for 30 days after the meeting via the EL-PFDD webpage. Please check back at a later date for information on how to submit written comments.

What will happen after the meeting?

The EL-PFDD meeting will result in several resources that will be made available to the CurePSP community.

The recording of the meeting is hosted on this webpage and our YouTube channel.

A “Voice of the Patient” report will be developed to capture patient and care partner perspectives from the meeting and written comment period. The report will be available on the CurePSP and FDA website at a later date.

CurePSP will share the recording and report with other stakeholders, such as industry partners.

Thank you to our Sponsors!