Pulmonary Fibrosis Foundation Commemorates One-year Anniversary of the PFF Community Registry
The Pulmonary Fibrosis Foundation (PFF) is commemorating the one-year anniversary of the PFF Community Registry, a research initiative that has successfully gathered data on pulmonary fibrosis (PF) and interstitial lung disease (ILD). With more than 1,600 participants, the Community Registry has become a valuable resource for researchers and medical professionals seeking to deepen their understanding of PF and ILD.
"The Community Registry is now reaching a critical mass, so that we can offer researchers more information to help further their understanding of PF," stated Joseph Lasky, MD, chief medical officer for the PFF.
The Community Registry is a database that relies on the collection of self-reported data through online surveys conducted every six months. It encompasses a diverse group of participants, including individuals who have been diagnosed with PF or ILD, including those who have had a lung transplant, as well as caregivers and biological family members of those with PF or ILD.
"There is no limit on the number of individuals who can join the Community Registry, and we are focused on growing it exponentially to reflect the significant population impacted by the disease," said Lasky. "Our goal is to increase diversity and ongoing engagement within the Registry, so that the data collected demonstrates the intricate nature of pulmonary fibrosis and can be utilized to improve outcomes for all patients." The Registry also allows the PFF to contact patients to refine information regarding new specific questions that arise, and to keep pace with patient experiences with care delivery.
The data collected through the Community Registry serves as a complement to the information gathered by the PFF Patient Registry, which began in 2016 and includes patient data provided by clinicians.
Reference
PFF Community Registry Crosses One-Year Mark with Over 1,600 Participants. (2023, July 26). Cision PR Newswire.
Improving Relationships and Diversifying the Site Selection Process
April 17th 2025In this episode of the Applied Clinical Trials Podcast, Liz Beatty, co-founder and chief strategy officer, Inato, discusses a number of topics around site engagement including community-based sites, the role of technology in improving site/sponsor relationships, how increased operational costs are impacting the industry, and more.
Behind the Buzz: Why Clinical Research Leaders Flock to SCOPE Summit
February 7th 2025In this episode, we meet with Micah Lieberman, Executive Conference Director for SCOPE Summit (Summit for Clinical Ops Executives) at Cambridge Innovation Institute. We will dive deep into the critical role of collaboration within the clinical research ecosystem. How do we bring together diverse stakeholders—sponsors, CROs, clinical trial tech innovators, suppliers, patients, sites, advocacy organizations, investors, and non-profits—to share best practices in trial design, program planning, innovation, and clinical operations? We’ll explore why it’s vital for thought leaders to step beyond their own organizations and learn from others, exchanging ideas that drive advancements in clinical research. Additionally, we’ll discuss the pivotal role of scientific conferences like SCOPE Summit in fostering these essential connections and collaborations, helping shape the future of clinical trials. Join us as we uncover how collective wisdom and cross-industry partnerships are transforming the landscape of clinical research.
FDA-Approved Gene Therapy Beqvez Shows Sustained Efficacy, Safety in Long-Term Hemophilia B Trial
April 17th 2025Beqvez (fidanacogene elaparvovec), an FDA-approved one-time gene therapy for hemophilia B, demonstrated sustained factor IX expression, low bleeding rates, and a favorable safety profile over long-term follow-up.
