Patient-Focused Drug Development Tracker

The U.S. Food and Drug Administration’s (FDA) approach for Patient-Focused Drug Development (PFDD) gives patients an opportunity to inform the benefit-risk assessments for medical products. To learn about PFDD and find links to important FDA resources, check out the first blog in our Externally Led PFDD blog series.

Our PFDD Meeting Tracker is a resource for anyone interested in the PFDD approach or planning to host an externally led PFDD meeting. The Tracker is a collated list of past and future PFDD and PFDD-like meetings, with links to resources such as reports, agendas, and archived recordings. You can also download a PDF version (Updated September 6, 2018).

The Tracker is a work in progress. If you can contribute any additional information, please contact Julien Rashid.  

Meeting Date of Meeting Host Organization(s)

The Voice of the Patient (Meeting Reports)

Agenda Recording
Major Depressive Disorder PFDD 11/16/2018 Depression and Bipolar Support Alliance      
Charcot-Marie-Tooth PFDD 9/28/2018  Hereditary Neuropathy Foundation     Recordings
Chemotherapy-induced Hearing Loss in Pediatric Oncology Patient-Focused Drug Development Workshop 9/13/2018 Children's Case for Cancer Advocacy; Children's Brain Tumor Foundation; Mattie Miracle Cancer Foundation; Momcology     Recording 
Alport Syndrome PFDD 8/3/2018  Alport Syndrome Foundation; National Kidney Foundation Agenda    
Juvenile Idiopathic Arthritis 8/2/2018 Arthritis Foundation; Childhood Arthritis and Rhuematology Research Alliance (CARRA)     Part 1, Part 2
Barth Syndrome PFDD 7/18/2018 Barth Syndrome Foundation   Agenda Recording 
Chronic Pain PFDD 7/9/2018  FDA      
Sleep Apnea Patient-Focused Medical Product Development (PFMPD) 6/8/2018  American Sleep Apnea Association Report Agenda Recording
Opioid Use Disorder PFDD 4/17/2018  FDA   Agenda Part 1 Part 2Part 3
Pachyonychia Congenita (PC) & Epidermolysis Bullosa (EB) PFDD 4/6/2018 Pachyonychia Congenita Project and debra Report Agenda Recording (PC)
Hypereosinophilic Syndromes PFDD 3/23/2018 American Partnership for Eosinophilic Disorders (APFED)   Agenda Recording
Duchenne Patient-Focused Compass Meeting 3/5/2018 Parent Project Muscular Dystrophy (PPMD) Report     Recording
Hyperhidrosis PFDD 11/13/2017 International Hyperhidrosis Society Report & Agenda   Recording
Lupus PFDD  9/25/2017  Lupus and Allied Diseases Association, Inc. (LADA); Lupus Foundation of America (LFA); Lupus Research Alliance (LRA)  Report & Agenda   Recording
Hereditary Angioedema PFDD  9/25/2017 FDA   Agenda Part 1Part 2
Alopecia areata PFDD  9/11/2017  FDA  Report Agenda Part 1Part 2
C3G PFDD  8/4/2017  National Kidney Foundation  Report  Agenda Recording
Tuberous Sclerosis Complex (TSC) & Lymphangioleiomyomatosis (LAM) PFDD 6/21/2017  Tuberous Sclerosis Alliance  Report Agenda Morning 1Morning 2Afternoon 1Afternoon 2 
Friedreich's Ataxia PFDD 6/2/2017  Friedreich's Ataxia Research Alliance  Report & Agenda    Recording 
Autism PFDD 5/4/2017 FDA Report Agenda Part 1Part 2
Spinal Muscular Atrophy PFDD  4/18/2017  cure SMA Report  Agenda Recording
Sarcopenia PFDD  4/6/2017  FDA Report Agenda  Recording
Osteoarthritis PFDD  3/8/2017  Arthritis Foundation  Report Agenda Recording 
Patients who have received an organ transplant PFDD  9/27/2016  FDA  Report Agenda  Part 1Part 2Part 3Part 4 
Myotonic Dystrophy (DM) PFDD 9/15/2016 Myotonic Dystrophy Foundation  Report & Agenda   Part 1Part 2 
Neuropathic patina associated with peripheral neuropathy PFDD 6/10/2016 FDA Report Agenda  Part 1Part 2Part 3Part 4
Psoriasis PFDD 3/17/2016 FDA Report & Agenda    Part 1Part 2 
Systemic Amyloidosis PFDD 11/16/2015 Amyloidosis Research Consortium (ARC) Report & Agenda   Part 1Part 2
Non-tuberculous mycobacterial lung infections PFDD 10/15/2015 FDA Report & Agenda   Meeting Slides
Alpha-1 Antitrypsin Deficiency PFDD 9/29/2015 FDA Report & Agenda    Transcript
Parkinson's Disease and Huntington's Disease PFDD 9/22/2015 FDA  Report & Agenda    Meeting Slides 
Functional GI Disorders PFDD  5/11/2015 FDA  Report Agenda  Transcript 
Chagas Disease PFDD 4/28/2015 FDA   Report & Agenda     
Breast Cancer PFDD 4/2/2015 FDA Report     
Female Sexual Dysfunction PFDD 10/27/2014 FDA Report     
Idiopathic Pulmonary Fibrosis PFDD  9/26/2014 FDA Report  Agenda  Transcript 
Hemophilia A, Hemophilia B, von Willebrand disease and Other Heritable Bleeding Disorders PFDD 9/22/2014  FDA  Report & Agenda     
Neurological Manifestations of Inborn Errors of Metabolism PFDD  6/10/2014  FDA  Report & Agenda     
Pulmonary Arterial Hypertension PFDD 5/13/2014 FDA  Report  Agenda  Transcript 
Fibromyalgia PFDD 3/26/2014  FDA  Report  Agenda  Transcript  
Sickle Cell Disease PFDD  2/7/2014  FDA Report  Agenda  Transcript  
Narcolepsy PFDD 9/24/2013  FDA  Report Agenda Transcript 
Lung Cancer PFDD  6/28/2013  FDA Report  Agenda Transcript 
Human Immunodeficiency Virus (HIV) PFDD  6/14/2013  FDA  Report  Agenda Transcript 
Chronic Fatigue Syndrome and Myalgic Encephalomyelitis PFDD  4/25/2013  FDA  Report