This spring has been filled with fun and new ideas for the UW Madison CF research team! Below you’ll find our team’s updates from our experience at the Wisconsin CF Consortium 2024 in Madison, and from our time spent at the Cystic Fibrosis Foundation Therapeutics Development Network conference in National Harbor, MD.
Wisconsin Cystic Fibrosis Consortium
Every year all members of CF care centers in the state get together for our Wisconsin CF Consortium. This year hosted by UW-Madison’s adult CF center, was a standout year that included three guest speakers covering multiple topics current in CF along with a new twist of roundtable discussions for all care center discipline groups.
To kick off the 2024 Wisconsin CF Consortium, Dr. Deanna Green, a pediatric pulmonologist from Johns Hopkins All Children’s Hospital in Florida, delivered a comprehensive overview of the recently published, Cystic Fibrosis Foundation Evidence-Based Guideline for the Management of CRMS/CFSPID. Developed by a committee including Dr. Green, the article encompasses updated US guidelines for the management of cystic fibrosis transmembrane conductance regulator-related metabolic syndrome/cystic fibrosis screen-positive and inconclusive diagnosis (CRMS/CFSPID). The guidelines consist of 30 statements aimed at assisting care teams in providing clinical recommendations for patients already diagnosed with these conditions. Each statement is graded for recommendation certainty and delves into various aspects of the diagnoses, including genetic testing, laboratory evaluations, and the use of CFTR modulators. Interested in reading the article? Click here.
We were fortunate to have Karen Raraigh, MGC, CGC, a certified genetic counselor from the Department of Genetic Medicine at Johns Hopkins join us and share her insights into her involvement in the Clinical and Functional Translation of CFTR (CFTR2) project. CFTR2 serves as a database of different cystic fibrosis gene variants sourced globally. This database offers a pivotal role in providing the distinctions between genes and their variants or variant combinations. These differences between mutations can shed light on their implications ranging from disease causing, non-disease causing, or varying clinical consequences along with other clinical trends, such as sweat chloride values. Notably, this project remains an ongoing endeavor, continuously growing to add more gene variants from diverse geographical regions to enhance its utility and scope. If you would like to visit CFTR2 visit this link here.
Our final speaker of the day was Nicholas “Nick” Kelly, MS, RD, LD. This may have been our first time personally meeting Nick, but his name wasn’t entirely new to us. We were introduced to him earlier at the NACFC 2023 conference where he was spotlighted during a plenary session that introduced patients with Cystic Fibrosis who did not qualify for CFTR modulators. Nick, a motivational speaker, author, and licensed and registered dietician, has engaged many audiences with his personal experiences living with CF, particularly living with CF in a world of modulators that aren’t available for him.
You can find more about Nick at NICHOLASKELLYRD.COM or to see his CFF spotlighted story click here.
Following the conclusion of our speakers, we transitioned into the networking phase of our day. A key objective of the consortium is to connect with other care centers and learn from each other in our respective disciplines. Various roundtables were organized, catering to specific topic discussions such as advocacy, support through patient transitions from pediatric to adult clinics, research studies, and pregnancy in CF. These sessions provided valuable opportunities for knowledge exchange and collaboration among participants.
For research we particularly enjoy this session because it offers a platform to showcase the ongoing and upcoming studies at UW and inform other sites of the current patient eligibility criteria we are currently searching for. In turn, it gives us an opportunity to learn what studies are being conducted at other sites, leading us to potentially identify eligible patients from our center for their studies. These sessions lead to maximizing the opportunities for CF research patient participation.
Therapeutics Development Network Spring Meeting
This April, we also flew to National Harbor, MD for an exciting Cystic Fibrosis Foundation Therapeutics Development Network conference. Over two days, clinical research teams from all over the country gathered to learn about cutting-edge initiatives, collaborated on best practices, and got to know one another!
This year, the talks were especially engaging, with topics ranging from the mechanisms underlying cystic fibrosis related diabetes (CFRD) and its diagnosis, to the importance of exploring mental health in clinical research.
CF-related diabetes is a common complication for those living with CF. Studies on the development and treatment of CFRD are emerging in order to improve clinical care for those with CFRD.
Mental health has also been a big topic of discussion in the post- CFTR modulator era. Mental health status is an important outcome measure that was discussed at the TDN Spring Meeting. It was highly encouraged that this information be captured throughout all future CF clinical research studies.
We are excited to see how these topics become a part of upcoming studies. Be sure to check out CFF’s Clinical Trials Finder and CF Clinical Trials at UW Madison to find out about emerging research!
In addition to these forward-looking sessions, we also attended more focused workshops. During one workshop, research coordinators came together to discuss complicated situations encountered at CF research centers around the country. We learned how these situations were challenging, what was done to manage them successfully, and how we can be prepared in case we come across something similar in the future.
After TDN Spring Meetings, we always leave with a notebook full of ideas. Events like this invigorate our commitment to constantly strengthen CF clinical research at UW Madison, as we strive to be on the cutting-edge with patient safety and interest at the top of mind!