Research

Find evidence—and understand what it means.

Research headlines rarely tell the whole story. Start with the study type, who participated, what was measured, and what questions remain.

Research foundations

Getting Started with NF Research

Learn how evidence develops, then open trusted sources for NF information, published studies, and clinical trials.

How to understand research evidence

Use these labels as a quick guide to how mature the evidence is—not as a guarantee that a finding applies to an individual person.

EstablishedSupported by stronger human evidence or clinical guidance
EmergingPromising human evidence that still needs confirmation
Early-stageLaboratory, animal, computational, or very early human work

Where should I start?

New to NF research? Begin with the NIH overview, use PubMed to find published literature, and use ClinicalTrials.gov to find registered clinical trials.

Research source directory

Search additional NF research sources

Search major U.S. research databases, funding programs, data portals, trial resources, and NF clinical-research programs. A small number of major international sources are included for research that may not appear in U.S. databases.

23 of 23 sources
View 23 sources
Data & research tools

CTF Drug Discovery Tools & Resources

Children’s Tumor Foundation · United States

Find curated NF datasets, model systems, biospecimen resources, and research tools supporting NF and schwannomatosis drug discovery.

Open source
Trials & participation

CTF NF Clinical Drug Pipeline

Children’s Tumor Foundation · United States

Browse an NF-focused view of active clinical research and treatment development, with links to official U.S. and international trial records.

Open source
Clinical research programs

Boston Children’s NF Research & Innovation

Boston Children’s Hospital · United States

Explore NF clinical trials, locally developed research projects, and national collaborations through the hospital’s Multidisciplinary Neurofibromatosis Program.

Open source
Clinical research programs

CHOP Neurofibromatosis Research

Children’s Hospital of Philadelphia · United States

Review research studies, clinical-trial work, and NF program updates from a pediatric center involved in multi-institutional NF research.

Open source
Clinical research programs

Cincinnati Children’s Neurofibromatosis Research

Cincinnati Children’s Hospital Medical Center · United States

Find clinical studies and laboratory research focused on NF-related tumors, plexiform neurofibromas, optic pathway gliomas, and treatment development.

Open source
Clinical research programs

Cleveland Clinic Neurofibromatosis Research & Trials

Cleveland Clinic · United States

Learn how Cleveland Clinic’s NF program connects children and adults with clinical trials and research across its neurological, pediatric, and cancer programs.

Open source
Funding & projects

DoD Neurofibromatosis Research Program

Congressionally Directed Medical Research Programs · United States

Review the federal NF research program’s priorities, funded awards, accomplishments, consumer involvement, and supported clinical research.

Open source
Trials & participation

EU Clinical Trials Information System

European Medicines Agency · International

Search public information about clinical trials conducted in the European Union and European Economic Area, including trial documents and locations.

Open source
Literature & evidence

Europe PMC

European Bioinformatics Institute and partners · International

Search international life-sciences literature, full-text articles, preprints, and linked research data alongside records also found in PubMed.

Open source
Genetics & regulation

FDA Drug Approvals and Databases

U.S. Food and Drug Administration · United States

Confirm official drug approvals, prescribing information, review documents, safety communications, and regulatory status.

Open source
Literature & evidence

GeneReviews: Neurofibromatosis 1

NCBI Bookshelf · United States

Read an expert-authored clinical reference covering NF1 diagnosis, manifestations, management, surveillance, genetics, and counseling.

Open source
Genetics & regulation

Genetic Testing Registry

National Center for Biotechnology Information · United States

Search submitted clinical and research genetic tests for NF1, NF2, SMARCB1, LZTR1, and related conditions; confirm current details with the laboratory.

Open source
Patient-friendly overviews

MedlinePlus: Neurofibromatosis

National Library of Medicine · United States

Start with a patient-friendly NF overview and follow selected links to genetics, diagnosis, treatment, clinical trials, and trusted health information.

Open source
Clinical research programs

MUSC Neurofibromatosis Research & Trials

MUSC Hollings Cancer Center · United States

Review NF-related neuro-oncology care, research expertise, and clinical-trial access through South Carolina’s NCI-designated cancer center.

Open source
Clinical research programs

NCI Neurofibromatosis Clinical Research

National Cancer Institute · NIH Clinical Center · United States

Explore NF natural-history studies, clinical research, patient resources, and participation opportunities from the NIH Neurofibromatosis Clinical Team.

Open source
Data & research tools

Neurofibromatosis Therapeutic Acceleration Program

Johns Hopkins University · United States

Explore NF1 research programs, shared genomic and tumor data, drug-discovery resources, publications, and collaborative initiatives.

Open source
Clinical research programs

NF Clinical Trials Consortium

University of Alabama at Birmingham · United States

Learn about the U.S.-coordinated network of primary and affiliate centers conducting clinical trials for NF1, NF2-related schwannomatosis, and other schwannomatoses.

Open source
Data & research tools

NF Data Portal

Sage Bionetworks · NF Open Science Initiative · United States

Explore shared NF1, NF2-related schwannomatosis, and other schwannomatosis datasets, publications, analytical tools, and open-science projects.

Open source
Funding & projects

NIH RePORTER

National Institutes of Health · United States

Search NIH-funded NF research projects, investigators, institutions, award details, abstracts, and linked publications or patents.

Open source
Literature & evidence

PubMed Central

National Library of Medicine · United States

Search a free full-text archive of biomedical and life-sciences journal articles, including many NF publications available without a subscription.

Open source
Clinical research programs

St. Jude NF Research & Clinical Trials

St. Jude Children’s Research Hospital · United States

Find NF1- and NF2-related cancer research studies and pediatric or young-adult clinical trials, including studies involving NF-associated low-grade glioma.

Open source
Clinical research programs

UAMS Neurofibromatosis Research

University of Arkansas for Medical Sciences · United States

Review research connected with the UAMS Neurofibromatosis Clinic and its work on NF-related tumors, manifestations, and patient care.

Open source
Trials & participation

WHO International Clinical Trials Registry Platform

World Health Organization · International

Search across participating international clinical-trial registries to locate studies registered outside the United States.

Open source

How to use this directory: Start with original study records, publications, datasets, or government documents whenever possible. A source’s inclusion does not mean every item it contains is clinically proven, current, or appropriate for an individual person.

Explore current activity

Research Radar

See which topics appear across the Hub’s currently retrieved PubMed publications, NIH-funded projects, and ClinicalTrials.gov studies. Select a topic to open the underlying records.

Building the current research picture…

How to read this: Counts show research activity in the limited records currently retrieved by the Hub—not evidence quality, treatment effectiveness, total worldwide research, or how close a topic is to a new treatment. Records may appear in more than one topic. Keyword rules assign topics without an AI API; uncertain items remain under Other emerging research.

Explore where research happens

NF Research Map

View U.S. locations connected with a verified NF research program or a study location returned by the Hub’s current ClinicalTrials.gov search.

9 location records · 8 states

Matching locations

United States

9 records
Verified research programBoston Children’s HospitalBoston, MA · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programChildren’s Hospital of PhiladelphiaPhiladelphia, PA · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programCincinnati Children’s Hospital Medical CenterCincinnati, OH · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programCleveland ClinicCleveland, OH · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programLe Bonheur Children’s Hospital and St. Jude Children’s Research HospitalMemphis, TN · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programMUSC HealthCharleston, SC · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programNational Cancer InstituteBethesda, MD · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programUAMS Adult Neurofibromatosis ClinicLittle Rock, AR · NF1 · NF2-related schwannomatosis · Schwannomatosis

NF clinic with a separately maintained research-program or clinical-trial source

Open source
Verified research programUniversity of Alabama at BirminghamBirmingham, AL · Confirm with program

NF clinic with a separately maintained research-program or clinical-trial source

Open source

Map boundaries: This is not a complete directory of all NF research. Program markers include only clinics with a separately verified research link. Study markers come from the currently retrieved ClinicalTrials.gov records and may be outdated, inactive, or not recruiting; always confirm the official record. A location on the map does not mean a person is eligible or that an intervention works. Publications and NIH awards are not mapped yet because affiliations and institution names require additional normalization.

Published research

Latest NF publications

Recently indexed NF and schwannomatosis research articles from PubMed. These are publications, not funding awards or clinical-trial registrations.

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Why can a future publication date appear? PubMed may supply an upcoming journal-issue date for an article already available online. Future-dated publications are hidden by default; clear the checkbox above to show them. The Hub retrieves up to 40 recent candidates so filtering does not hide relevant results, displays 12 by default, and lets you continue showing more until every qualifying retrieved publication is visible. The automatic search groups neurofibromatosis OR schwannomatosis and can return matching publications from any institution, including the NF clinics listed above. Use the PubMed link above for the complete result set. Automatically retrieved from PubMed.

Funded research

Recently funded NF projects

Active NIH-funded projects whose titles explicitly identify NF, neurofibromatosis, or schwannomatosis. A funding award does not mean a study is complete or has published results.

0 of 0 retrieved projects meet the NF-title rule
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The automatic NIH RePORTER search treats neurofibromatosis OR schwannomatosis as alternatives, then keeps projects whose titles explicitly identify an NF-related term. Matching awards from listed clinics can appear without a separate clinic feed. Automatically retrieved from NIH RePORTER. Inclusion does not mean a project is complete, clinically proven, or applicable to an individual person.

Research participation

Find an NF Study or Clinical Trial

Explore drug and non-drug NF research—including interventional trials, observational research, natural-history studies, and registries—then open the official ClinicalTrials.gov record to confirm eligibility, locations, contacts, and current status.

Open ClinicalTrials.gov

ClinicalTrials.gov study results

Checking ClinicalTrials.gov…

The ClinicalTrials.gov request groups neurofibromatosis OR schwannomatosis and does not limit results to drug trials. Study categories and research topics are derived from wording in each registered record and may not capture every relevant detail. Matching studies from any sponsor or clinic can appear automatically; eligibility, recruiting locations, and contacts must still be confirmed on the official study record.