Pediatric Low-Grade Glioma Externally-Led Patient-Focused Drug Development (pLGG EL-PFDD) Meeting Presented by the Pediatric Brain Tumor Foundation
The pLGG EL-PFDD Meeting, hosted by the Pediatric Brain Tumor Foundation, is a unique opportunity for pediatric low-grade glioma patients, survivors, their families, and caregivers to speak directly to the U.S. Food and Drug Administration (FDA), pharmaceutical companies, and the public about their current and past experiences with pLGG and the impact the disease has had on their daily lives.
Come Back Here to Watch the Meeting Live:
Friday, February 23, 2024
10 a.m. – 3 p.m. ET
This virtual meeting is open to the public and will improve attendees’ understanding of the most common type of pediatric brain tumor and the current treatments, care, and research available. The meeting agenda will include remarks from the FDA, two brief clinical and treatment overview presentations by pLGG medical experts, patient/caregiver panels, and extensive audience discussion sessions about pLGG symptoms, the disease’s impact, and treatments. View the full agenda here.
After the meeting, the Pediatric Brain Tumor Foundation will publish a Voice of the Patient report based on the insights patients, families, and caregivers share.
What Is an EL-PFDD Meeting?
Externally-led Patient-Focused Drug Development (EL-PFDD) Meetings bring together patients and caregivers, representatives from the U.S. Food and Drug Administration (FDA) and other regulatory/federal agencies, pharmaceutical companies, academic researchers, clinicians, and healthcare professionals who are experts in a particular disease.
The goal of the Pediatric Low-Grade Glioma Externally-Led Patient-Focused Drug Development Meeting is to give pLGG patients and survivors, their families, caregivers, and patient advocates an opportunity to directly share with the FDA and pharmaceutical companies the symptoms that matter most to them, the impact the disease has on their daily lives, and their current or past experiences with available treatments.
Participants’ input will help the FDA and other attendees make future decisions about new drugs, from development to approval.
Prepare for the EL-PFDD Meeting | Important Dates
January 11, 2024, 1-2 p.m. ET
Community Webinar: EL-PFDD Meetings with the FDA Led by James Valentine, JD, MHS, Meeting Moderator
The meeting is free, but registration is required:
Sign up to attend: Patients, survivors, family members, representatives from the FDA and other regulatory/federal agencies, pharmaceutical companies, academic researchers, clinicians, healthcare professionals, and members of the public can sign up for the meeting here.
Submit a written comment: If you are a pediatric low-grade glioma patient, survivor, family member, or caregiver, we encourage you to submit a written comment here prior to the meeting about the meeting’s discussion topics.
On-demand webinar: Watch the video recording of our January 11th community webinar here to learn how your participation in February’s EL-PFDD meeting will help shape the future of pediatric low-grade glioma treatment.
After the meeting, a report titled "Voice of the Patient" will be produced by the Pediatric Brain Tumor Foundation and sent to the FDA. This will give the FDA a reference point for their decisions concerning the approval of potential pediatric low-grade glioma treatments. The report will also be available to the public, including pharmaceutical companies.
Frequently Asked Questions
If I submit a question or comment or take a patient survey for this meeting, what will you do with the information I provide?
The information you provide will remain strictly confidential and will be used for planning the meeting.
Some of your responses may be included in the meeting, in the Voice of the Patient Report, or in other associated documents. Patient identification will always be removed and patient information will be presented as grouped data from many patients. If you have questions about how your responses will be used, please email [email protected].
What does it cost to attend?
This meeting is free and open to the public.
How do I register?
Pediatric low-grade glioma patients, survivors, family members, and caregiver, as well as representatives from the FDA, other regulatory/federal agencies, pharmaceutical companies, academic researchers, clinicians, healthcare professionals and members of the general public can sign up for the meeting here.
The link to join the livestream will be available before the meeting. EACH PERSON (e.g., PATIENT, PARENT, FAMILY MEMBER CAREGIVER, ETC.) MUST REGISTER SEPARATELY.
When and for how long is the meeting?
The meeting will take place on Friday, February 23rd, 2024 from 10 a.m. to 3 p.m. Eastern Time.
Yes! We welcome patients and survivors of all ages who were diagnosed with a low-grade glioma when they were between the ages of 0 and 18 years old.
Is this for low-grade glioma patients diagnosed as an adult?
No. This meeting will specifically focus on the needs and experiences of families of a low-grade glioma patient or survivor who was diagnosed when they were between the ages of 0 and 18 years old.
What happens after the meeting?
The Pediatric Brain Tumor Foundation will produce the Voice of the Patient Report. This will be posted on our website and sent to the FDA and can be used to help in their decisions to review and approve potential treatments for pediatric low-grade glioma.
The Pediatric Brain Tumor Foundation is the largest patient advocacy funder of pediatric brain tumor research and leads the way in supporting families affected by this disease. Visit curethekids.org/research to learn how we're changing the treatment landscape for children with low-grade gliomas and other brain tumors. If you and your family need help following a child's brain tumor diagnosis, email us today at [email protected].