The Children’s Tumor Foundation (CTF) has officially re-launched the NF Registry on World NF Awareness Day, marking a significant step forward in advancing global research on neurofibromatosis (NF) and schwannomatosis. The updated registry is designed as a patient-powered research platform that enables individuals living with NF to contribute directly to scientific studies aimed at improving treatments and accelerating drug development.
The relaunch introduces the registry on the NORD IAMRARE platform, offering improved accessibility, enhanced data collection tools, and a more user-friendly experience for participants worldwide. The upgraded system is intended to strengthen collaboration between patients, researchers, and clinicians while ensuring higher-quality data to support research on disease progression and treatment outcomes.
The NF Registry allows participants to share health information through structured surveys, helping researchers better understand how NF affects individuals over time. This real-world data plays a key role in identifying patterns of symptoms, supporting clinical trial recruitment, and improving knowledge of rare disease progression.
CTF emphasized that the registry is part of its broader mission to accelerate drug discovery and improve care for people living with NF worldwide. By connecting patients directly with the research community, the organization aims to speed up the development of new therapies and enhance understanding of this rare genetic condition.
The relaunch on World NF Awareness Day also highlights the importance of global awareness and participation in rare disease research. CTF continues to encourage patients and families to engage with the registry as a way to contribute to long-term scientific progress and improved treatment options for NF.
