Cystic Fibrosis Newborn Screening Collaboratives

Funding for these Collaboratives is provided by the Cystic Fibrosis Foundation (SONTAG24QI1)

CPHI is leading multi-state collaboratives designed to help CF Centers and newborn screening programs improve communication, identify bottlenecks, and strengthen screening systems. Organized into four topic areas, the collaboratives meet regularly to share solutions and strategies.

• Goals of the Collaboratives

  • Develop process improvement strategies to support the timely screening and diagnosis of babies with CF.

  • Provide a format to highlight and problem-solve issues most important to participants

  • Establish regular meetings for Quality Improvement (QI)

    
    

• Collaborative Groups: We have established four key collaborative topic areas, each with designated meeting times:

  • IRT Cutoffs and Decision-Making First Thursday of even months at 3 PM ET, starting in April.

  • Education for Parents and Providers First Monday of even months at 11 AM MT, starting in April.

  • CFTR Sequencing Considerations and Reporting Third Friday of odd months at 3:00 PM ET, starting in May.

  • Communicating NBS Results to PCPs and CF Centers First Thursday of odd months at 1 PM ET, starting in May.

    
    

• Webinars: We will be hosting a series of webinars led by content experts to facilitate knowledge sharing across all collaboratives. (More information here)

  
  

All states are invited to participate in one of the collaborative groups described above to share solutions, challenges, and best practices with other state teams. We encourage every state to designate representatives from their NBS programs and CF Centers to meet regularly within their state. This collaboration will foster opportunities to enhance the state CF NBS program. Collaborative meetings will be held bimonthly, and we encourage state teams to meet in the off months as well.

• New Participants: If you are new to the CF NBS Collaboratives, please attend one of our overview meetings with your state team to learn more about the collaborative process, including topic discussions, process mapping, and meeting objectives. This will help your state team determine which collaborative topic is best for your team to start.

  • Wednesday, April 9th at 2:00 PM ET

  • Tuesday, April 15th at 4:00 PM ET: Register for the April 15 Collaborative Meeting Here

    
    

• Returning Participants: If your state was involved in previous collaboratives, be on the lookout for invitations to the upcoming meetings.

Ready to join a collaborative group? Use the QR code below to complete your selection survey.

We look forward to your active participation and to working together to improve cystic fibrosis newborn screening across the nation!