ResearchCon 2022 | Let's Build the Future of Daily Care Together

With the introduction of highly effective modulator treatments and additional therapeutic advances, the state of daily care for people with cystic fibrosis is evolving rapidly. Three clinicians alongside a parent of a child with cystic fibrosis, share where we are with daily care and where we’re going. Speakers will share about research studies currently in process (HERO2, SIMPLIFY, QUEST, and PROMISE), how the CF community is the driving force behind these studies and their forthcoming results, and how data combined with individual needs can lead to a more informed quality of life for those with CF and their families and caregivers. Originally recorded April 9, 2022. 0:00:00 | Let’s Build the Future of Daily Care Together 0:03:00 | Q&A on daily care and research from a caregiver perspective, between pediatric cystic fibrosis program coordinator, Shine-Ann Pai, Lathronia Jefferson, a parent of a child with CF 0:11:40 | Current status of research related to daily care with Cynthia Brown, MD 0:30:18 | Where is research related to daily care headed? 0:45:15 | Discussion about hopes for the future with Shine-Ann Pai, pediatric CF program coordinator, and Lathronia Jefferson a parent of a child with CF 0:51:30 | Q&A 0:55:47 | What advice can you give to a new mother of a baby with CF? 0:55:30 | How can I have good daily care for myself when I live alone? 0:58:45 | How can or does your social worker best help you? 1:02:05 | As a member of the international CF community, how can I contribute to CF research? 1:03:30 | Based on the positive results from Trikafta, what parameters will clinics use for the basis to reduce the frequency of airway clearance treatments? 1:06:40 | Was an occupational therapist involved in the creation of the daily care check-in tool? 1:08:55 | Any advice for individuals hesitant to talk to their care team about research, especially from groups underrepresented in clinical trials? 1:12:30 | Session wrap up