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NF Collective

The NF Collective is a group of organizations dedicated to improving the lives of neurofibromatosis (NF) patients and their families by providing accurate and reliable information about NF resources and caregivers.

The first national NF organization was started in 1978. Since that time, a number of organizations, many of them involved with this collective, have been created to address various needs within the NF community. Each group has specific focus areas but all share the common goal of curing NF.

Recognizing a critical need for NF families to find reliable NF care, the member organizations of the NF Collective joined forces to provide a single, reliable, updated resource of NF providers.

The first national NF organization was started in 1978. Since that time, a number of organizations, many of them involved with this collective, have been created to address various needs within the NF community. Each group has specific focus areas but all share the common goal of curing NF.

Recognizing a critical need for NF families to find reliable NF care, the member organizations of the NF Collective joined forces to provide a single, reliable, updated resource of NF providers.

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REiNS

REiNS is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2, and schwannomatosis. Response criteria will continue to be modified as we gain experience in clinical trials for NF. We hope these criteria will be incorporated into future clinical trials and will improve our ability to determine and compare treatment efficacy.

BACKGROUND

The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) international collaboration was established in 2011 at the Children's Tumor Foundation annual NF conference to achieve consensus within the NF community about the design of future clinical trials, with a specific emphasis on endpoints.

The REiNS Collaboration includes nine working groups that focus on specific areas including: imaging of tumor response; functional, visual, neurocognitive, and patient-reported outcomes; disease biomarkers; cutaneous neurofibromas; patient representatives; and the newest working group, gene therapy.

The hope is that the recommendations from this collaborative effort will be used by all researchers to standardize the measurement of outcomes and thus improve clinical trials and other outcome measures for individuals with NF. Children’s Tumor Foundation provides ongoing support for many REiNS efforts.
The first national NF organization was started in 1978. Since that time, a number of organizations, many of them involved with this collective, have been created to address various needs within the NF community. Each group has specific focus areas but all share the common goal of curing NF.
Recognizing a critical need for NF families to find reliable NF care, the member organizations of the NF Collective joined forces to provide a single, reliable, updated resource of NF providers.

Learn More

Global Coalition for Adaptive Research (GCAR)

The Children’s Tumor Foundation and Global Coalition for Adaptive Research (GCAR) are partnering to accelerate the development of treatments for patients with all types of neurofibromatosis or schwannomatosis. CTF and GCAR will operationalize a first-of-its-kind clinical trial for patients with NF that was initially designed through the EU-PEARL initiative. The announcement of this strategic alliance followed a 3-year, 26-million-euro investment from the Innovative Health Initiative (IHI), formerly called the Innovative Medicines Initiative (IMI). Through this partnership, leading organizations representing patients, clinicians, researchers, health authorities, and industry collaborated to design the first-ever Phase 1 / Phase 2 global platform basket trial for patients with neurofibromatosis type 1 or schwannomatosis, including NF2-related schwannomatosis.

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Children's tumor foundation and global alliance for adolescent cancer research.

CTF Preclinical Hub

The Children’s Tumor Foundation is accelerating the path to drug discovery by constructing an NF-focused Preclinical Hub to supercharge the development of NF treatments. As our understanding of NF has grown, more potential treatments are now within our grasp, and effective preclinical testing will better predict success once the drug moves into clinical trials.

CTF's Preclinical Hub speeds innovation and builds bridges across academia, industry, and the medical community. The Preclinical Hub will streamline access to the best preclinical models and guide each potential treatment through a swift and appropriate screening journey, saving time and money. In this partnership, leading organizations representing patients, clinicians, researchers, health authorities, and industry collaborated to design the first-ever Phase 1/Phase 2 global platform basket trial for patients with neurofibromatosis type 1 or schwannomatosis, including NF2-related schwannomatosis.

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Through the NF Preclinical Hub, CTF offers:

  1. Negotiated Master Service Agreements
  2. Predetermined protocols and tests
  3. Access to CTF models, data tools, libraries, and biomarkers

The CTF Preclinical Hub will catalyze drug discovery, increase testing, and speed the approval of potential treatments.

To enter the Hub, your model must be already characterized and validated. If you and your institution are willing to contribute cell lines and/or animal models to the Hub, please email Irene Morganstern (imorganstern@ctf.org), Director of Preclinical Initiatives.

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