CurePSP Externally-Led Patient-Focused Drug Development Meeting

On February 6, 2026 from 10am until 3pm ET, CurePSP will host 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.

Register here

Your Input Needed for Drug Development Decision-Making: Share Your PSP Experience - YouTube Video

Submit Your Comments Early

Submit a comment below on the topics we will be discussing in advance of the EL-PFDD meeting. Comments should be submitted individually.

The comments collected may be shared during the PSP EL-PFDD and may also be used in the final Voice of the Patient report (with identifying information removed).

Topic 1 - PSP Symptoms & Daily Impact

Of all the health effects of PSP, which 1-3 symptoms have the most significant impact on you or your loved one’s life?

How does PSP affect you or your loved one on best and on worst days?

How have your or your loved one’s symptoms changed over time?

How has the ability to cope with the symptoms changed over time?

Are there specific activities that are important to you or your loved one that you/they cannot do at all or as fully because of PSP?

What do you fear the most as you or your loved one gets older?

What worries you most about you or your loved one’s condition?

Topic 2 - Current & Future & PSP Treatments

What are you currently doing to manage your or your loved one’s PSP?

How well do these treatments treat the most significant symptoms and health effects of PSP?

What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life?

Short of a complete cure, what specific things would you or your loved one look for in an ideal treatment for PSP?

What factors would be important in deciding whether to participate in a new research trial?

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 will be covered during the meeting?

An EL-PFDD meeting focuses 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.

This EL-PFDD meeting hosted by CurePSP will focus exclusively on progressive supranuclear palsy (PSP).

Who can attend 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 will happen during the meeting?

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

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

The first panel focuses on the symptoms and daily impacts of the condition, while the second panel focuses on the current treatment approaches and what participants would look for in an ideal treatment. Panel two may also include a discussion of what patients consider when determining whether or not to participate in clinical trials, and a discussion of benefit-risk to better understand what tradeoffs patients may perceive as acceptable.

Each topic starts with a panel of patients and care partners who each speak 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 is open to all patients and care partners in the audience. The goal is 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 will be 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.

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

How can industry partners support this event?

Sponsorship opportunities for the EL-PFDD meeting will be available. Please email Jennifer Brummet at brummet@curepsp.org if you are interested in supporting this event.

Thank you to our Sponsors!