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CTF Progress in SWN

Platform Basket Trials

CTF is a funding partner with EU-PEARL, a joint project building platform trials in which multiple drugs are tested in parallel under the same clinical protocol. This approach leads to more efficient identification of potential treatments for patients.

Thanks to CTF’s advocacy efforts in Europe, NF was chosen as a prototype for rare diseases for this effort. The NF component of EU-PEARL is co-led by CTF and the Erasmus Medical Center in Rotterdam, Netherlands. While a network of European clinics will be the first of many to execute these trials, the established protocols will enable trials like this to run globally.

Among other protocols, a schwannomatosis platform trial protocol is being developed that will enroll schwannomatosis patients, including NF2-related schwannomatosis patients, and will test the ability of drugs to shrink tumors.

The Children’s Tumor Foundation partners with Takeda Pharmaceuticals and six leading medical centers on a clinical trial called INTUITT-NF2, an innovative platform trial that evaluates multiple treatments simultaneously.

Learn more about this trial here

CTF Grant Funding

The Children’s Tumor Foundation is dedicated to funding research that will prevent, reverse, or manage complications of all types of NF. CTF has played an important role in funding early-career NF researchers and early-stage NF research.

Our Discovery Fund supports individual researchers and clinicians engaged in NF investigations. The Discovery Fund encompasses the Young Investigators Award (YIA), Drug Discovery Initiative (DDI), and Clinical Research Awards (CRA), as well as Contract Awards and Gene Therapy awards.

Impact of CTF Funding


years of funding NF research


Young Investigators were drawn to the NF field via the YIA


NF Research Projects Funded

Use the Children’s Tumor Foundation’s Award Database to discover investigators and projects driving key advances in NF research.


Latest SWN Research Awards

NF2-SWN Young Investigator Award & Drug Discovery Initiative Research Awards

Learn More

Clinical Trials

Clinical trials help identify potential new treatments that will benefit patients living with NF. The number of clinical trials for NF has increased to three times the number of trials from just a decade ago. Many of these potential treatments are directly due to research sponsored by the Children's Tumor Foundation.

Click here to search for schwannomatosis

Tips for your Clinical Trials search

“Targets” are the part of the disease process that the drug tries to stop.

  • “Agents” are the drug names.
  • “Phases” are the current stage of research. The higher the number of the Phase, the closer the treatment is to being approved for use in NF patients.
    • Phase 0 is very early stage testing
    • Phase 1 tests for drug safety
    • Phase 2 tests whether the treatment works.
    • Phase 3 tests whether the new treatment is better than existing treatments

You can also find more information at by clicking on “Clinical Trials” on the menu bar, or reading CTF’s resource for patients, What is a Clinical Trial?

For clinical trials in Europe, search

Two people in lab coats working on a microscope.

International Schwannomatosis Database

The Children’s Tumor Foundation is proud to be the exclusive funder of the International Schwannomatosis Database. The International Schwannomatosis Database is maintained with the vision of bringing together patients with schwannomatosis who want to help us learn more about this disease with researchers who are sponsoring trials. This initiative is a tremendous asset to accelerating research in schwannomatosis and helps generate interest from the pharmaceutical industry.

CTF Team Science and Data Sharing



Invested in Synodos for Schwannomatosis


The number of clinical trials in just 10 years


Pharma/biotech companies drawn toward NF

The Children’s Tumor Foundation research model values collaboration in every aspect of the drug discovery process. Diverse teams of experts managed by the Foundation collaborate and share their discoveries and data. By working together instead of in silos, we greatly increase the efficiency of research into problems that are too complex to be solved by individual scientists.

Click the titles of the past and present CTF team-science initiatives below to learn more about CTF progress in open data sharing.

Year of Open Science

The Children’s Tumor Foundation’s latest partnership is out of this world! CTF is euphoric to be part of the #YearofOpenScience, a collaboration spearheaded by the Center for Open Science, with support from NASA. Together with 15 additional organizations, these groups will convene for a series of working sessions to align collective action, culminating with a Year of Open Science conference in 2024 to showcase outputs, coalition-building, and ongoing work from these joint efforts.

Read More

Synodos for Schwannomatosis

An international consortium of clinicians and scientists from multiple disciplines made up the Synodos for Schwannomatosis team. In 2021 the project completed the work of performing an extensive molecular analysis of schwannomatosis tumor samples to identify new therapeutic targets and advance the understanding and management of the disease, with a special focus on pain.

Synodos has represented a significant financial commitment on the part of the Foundation. In each Synodos collaboration, CTF assembles “dream teams” of doctors, scientists, and patients who work together to solve problems that are too complex for any individual lab or researcher to solve. Our goal is to speed the drug discovery process through innovative research methods, collective knowledge, and data shared openly through CTF’s NF Data Portal. This data is analyzed by our partners at Sage Bionetworks and is then made available to the rest of the world. This approach is expanding interest in NF research to additional fields, including cancer.

Watch our Synodos explainer video here.

In addition to Synodos for Schwannomatosis, the Foundation launched Synodos for NF2 , and two Synodos for NF1 consortia.

The NF Data Portal

Through our partnership with Sage Bionetworks, data is available and ready to use in the NF Data Portal. This centralized data repository is managed by specialists who collect, analyze, and release integrated data, accelerating the understanding of all types of neurofibromatosis and schwannomatosis, and the identification of “druggable” targets.

Read More

NF Preclinical Initiative

The NF Preclinical Initiative (NFPI) began in 2008 as the NF Preclinical Consortium (NFPC), a five-year, $7 million program that concluded in 2013. It expanded as the NF Therapeutic Consortium (NFTC), which continued the work of the NFPC, building on its infrastructure and discoveries.

Traditionally, it takes more than 15 years and costs hundreds of millions of dollars to translate a new discovery into one clinical treatment. The impact of the NFPI was clear: these teams completed 116 preclinical trials in 8 years, at a total cost of $11 million. The preclinical studies led to multiple clinical trials, many of which are currently underway. One of those clinical trials included the MEK inhibitor selumetinib registration trial.

Make an Impact

Join the NF Registry

The NF Registry is a secure website where people with any type of schwannomatosis or neurofibromatosis can take an active role in the search for better treatments. Joining the Registry is as simple as filling out a survey about your symptoms and experiences.

Join the NF Registry


The Children’s Tumor Foundation’s mission is to end NF through research. The funding directed toward this critical research comes from donors like you. Your generosity makes real progress possible.