2026 NF Knowledge Series: Launching the New NF Registry

The February NF Knowledge Series: Launching the New NF Registry was hosted by Kate Kelts, RN, BSN, and provided an introduction to the updated NF Registry now hosted on NORD's IAMRARE® platform. This monthly webinar series serves as an educational resource for patients and families living with any form of NF. NF includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2, or NF2. This session was particularly special as it focused on the NF Registry, a vital tool in the fight against NF.

Play Video

The NF Registry: A Patient-Powered Initiative

The NF Registry was launched in 2012 as a patient-powered registry, allowing individuals living with NF and their caregivers to lead the collection and sharing of health information. This initiative aims to support research and enhance the understanding of NF. As Kelts, the VP of Research, Impact, and Engagement at CTF, explained, "The NF Registry is an opportunity to try to move that needle and empower patients to be a part of that, enrolling in these studies and driving research forward."

The registry has engaged over 12,000 participants worldwide, supporting recruitment for over 100 NF research studies and clinical trials. It has been cited in more than 50 scientific publications, highlighting its impact on advancing NF research.

Challenges and Lessons Learned

Despite its successes, the NF Registry faced challenges that prompted a reevaluation. In 2023, a partnership with Accenture allowed CTF to analyze the registry's data, revealing two key issues: a lack of active engagement and limited long-term data collection. Approximately 90% of participants were not actively engaged, and most completed only a single survey. This highlighted a communication breakdown and the need for a more dynamic and engaging platform.

"We really want participants to feel like there's value to visiting the registry regularly, and we needed to be giving them that value," said Kelts.

Revamping the Registry: New Priorities and Platform

In response to these challenges, CTF, alongside dedicated volunteers, set new priorities for the registry. These include enhancing accessibility by providing the registry in multiple languages and allowing study partners to assist participants. The registry will also transition to a more flexible platform, hosted by the National Organization for Rare Disorders (NORD) on their IAMRARE® platform. This move promises a 90% reduction in costs and a more user-friendly experience, including a mobile app for easy access.

Participants will benefit from real-time access to de-identified data, regular updates on research opportunities, and a commitment to transparency and return of information from researchers. This aligns with CTF's mission to empower patients and caregivers, ensuring they are active partners in the research process.

Looking Ahead: A Call to Action

As the NF Registry prepares to relaunch this spring, the NF community is invited to take a seat at the research table. By joining the registry, participants ensure that their voices remain at the center of research breakthroughs. Kelts emphasized, "Only together can we turn individual stories into that big real-world evidence that's needed to accelerate treatments and ultimately to find a cure for every form of NF."

"We want our patients and families and caregivers at the table, not just on the table."

Join the Movement

As CTF looks towards the launch of the NF Registry, you are invited to be part of this effort. Here are some ways you can get involved:

• Join the NF Registry:Visit nfregistry.org to learn more and sign up.
• Stay Informed: Subscribe to CTF's newsletter and follow us on social media for updates on the registry and upcoming webinars.
• Participate in the NF Knowledge Series: Register for the March session on NF1 Plexiform Neurofibromas and Adults, presented by Dr. Mina Lobos from the Cleveland Clinic.

Visit NF Knowledge Series webinarsfor more information, and subscribe to our newsletter to stay informed about upcoming events and resources.