ResearchCon to include talks on CF treatments, newborn screenings

Two-day free virtual event to discuss research, future of disease

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by Mary Chapman |

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The Cystic Fibrosis Foundation (CFF) on April 30-May 1 will present ResearchCon, a free virtual event for patients, caregivers, scientists, and clinicians that will explore research advancements and the future of cystic fibrosis (CF).

The event, created with the CF community, will include keynote addresses, presentations, roundtable discussions, and social lounges. Registration is open.

In addition to topics including gene therapy development, life without CFTR modulators, and pain management, this year’s meeting also will cover “popular topics in the CF community” such as clinical research participation, liver disease, and reproductive health during modulator treatment, the foundation said in an email to Cystic Fibrosis News Today.

“ResearchCon is for everyone with a personal or professional connection to cystic fibrosis to learn and discuss CF-related science and care alongside others living with and studying the disease,” the foundation notes on its ResearchCon webpage.

Attendees during keynote addresses and other presentations will be able to communicate with each other and submit questions to the speakers or panelists through event “chat” and “Q&A” functions. Recordings will be available for future viewing on the organization’s YouTube channel. The keynote addresses, presentations, and some roundtable discussions will be translated live in Spanish.

Speakers will include physicians, researchers, therapists, genetic counselors, a clinical trial expert, and a dietitian. Other presenters will include a physical therapist, patients, an expert in complex family planning, and CF parents.

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Agenda for ResearchCon includes social lounges, keynote addresses, roundtables

The agenda begins April 30 with social lounges — opportunities for video chats and socializing with others, including experts and other attendees, using the computer’s camera and microphone.

The lounges will be followed by a keynote address titled “Where We Are: CF Drug Pipeline Developments,” which will cover the development of treatments including gene therapies, medications for infection, and CFTR modulators.

There next will be concurrent sessions including one titled “The Hits and Misses of CF Newborn Screening: Telling the full story from a health equity lens.” The session, which will feature a genetic counselor and CF parents, will focus on the newborn screening process and upcoming opportunities to help shape newborn screening policy in the U.S. It will also discuss health equity in CF.

The other session in the first round will cover the “Landscape of Genetic Therapies for Cystic Fibrosis” and will feature clinicians, researchers, and a CF parent. A roundtable discussion will center around work conducted at the foundation’s Therapeutics Lab.

The next round of concurrent sessions will include one titled “Participating in Clinical Research: What you need to know,” which will explore the clinical trial process and the importance of study participation. There also will be a roundtable discussion on infection research and one covering the different care models for managing nonpulmonary complications after a lung transplant.

The following day will begin with another keynote address, this one titled “Where We’re Going: Adapting CF care to evolving needs.” It will cover future changes in CF care for all patients, CFTR modulators, and organ transplants.

Options for the first round of May 1 sessions will include “Understanding the Complexities of Liver Disease and CF,” which will discuss chronic liver disease, screenings, the impact of CFTR modulators, preparing for a liver transplant, and life after liver transplant. Another session, “Fitness and Food: How to make it work for you,” will explore CF exercise and nutrition recommendations and challenges. There will also be a roundtable discussion, “Community Insights: Life without modulators.”

Final concurrent sessions will include “The Effects of Modulator Therapies on Pregnancy and Reproductive Health” and a roundtable discussion on “Psychological Interventions for Pain Management.”

“Regardless of their connection to CF or where they are on their CF journey, attendees can explore their curiosity and engage with the whole CF community, including experts and peers,” the CFF states on the event webpage. “This virtual event provides a space to ask deeper questions and provides attendees with knowledge to better advocate for themselves, their loved one, or their patients.”