OPPORTUNITY FOR PARENTS AFFECTED BY BPD/CLD/CPIP: The FDA’s Patient Affairs is reaching out regarding an exciting opportunity for individuals who are affected by Bronchopulmonary Dysplasia (BPD), also referred to as Chronic Pulmonary Insufficiency of Prematurity (CPIP) or chronic lung disease (CLD). The office is organizing two upcoming FDA Patient Listening Sessions in collaboration with the National Organization for Rare Disorders (NORD) in March 2023. The Patient Listening Sessions will take place by phone on Friday, March 17th, 2023, at 1:30pm – 3:00pm Eastern Time or Monday, March 20th, 2023, at 1:00pm – 2:30pm Eastern Time. The sessions will occur via a virtual meeting platform and will focus on helping the FDA better understand the perspectives and experiences of individuals who had BPD as an infant/child and of the parents/caregivers of individuals with BPD/who had BPD. During the session, the FDA would like to better understand the burden of BPD and what is the most important clinically from a short-term and long-term perspective. There are a limited number of openings for participating in one of the two sessions. Patients and parents/caregivers who are interested should complete the survey below to share more about themselves and their experience with Bronchopulmonary Dysplasia. Participants will be selected by the FDA based on their responses to the following survey: Patient Listening Session interest survey: https://www.surveymonkey.com/r/BPD_FDA Deadline: February 6th, 2022 FDA Patient Listening Sessions are small, informal, non-public virtual meetings that allow a select number of participants to share their experiences and perspectives with the FDA staff first-hand. The Agency’s Patient Listening Session program allows FDA to better understand what is most important to different patient communities who have specific health, medical, and treatment needs. These Sessions can help inform medical product development and clinical trial design, help FDA understand patient preferences and needs, and help shape FDA’s regulatory thinking. The only people who participate in the Patient Listening Session are the invited participants and FDA staff. Please note, this is NOT a Hand to Hold-led study.

Posted by Leigh Ann at Hand to Hold at 2023-02-03 21:43:01 UTC