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Neurofibromatosis Midwest

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Research Trials and Studies

Highlighted Research Trials and Studies

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Research Trials and Studies

Go to CLINICALTRIALS.GOV for a more comprehenisive list of ongoing studies and trials.

Research Studies and Trials

NF1 Research Studies and Trials

Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients.

Stanford Ophthalmology, Children's Hospital of Philadelphia and Gilbert Family Foundation | 2024

This study is seeking to learn how different eye tests and devices can…

Johns Hopkins Various Clinical Trials

Johns Hopkins Comprehensive NF Center

Researchers at Johns Hopkins and around the world are investigating ways to slow…

My NF Guide Study RECRUITING!

Massachusetts's General Hospital | 2024

If you or your child has NF1, and you don't go to an…

Neural Underpinnings of Attention in Children with NF1

University of Wisconsin-Milwaukee | 2023
By Dr. Bonnie Klein-Tasman

Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study-RECRUITING NOW.

Dana-Farber/Boston Children's | 2024

The Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study will determine whether a…

NF1 Plexiform Neurofibroma Pain Scale Research Study

National Institutes of Health (NCI) | 2025

Recruiting for children (8+ years), adolescents, and adults with NF1 and plexiform neurofibromas…

Topical Gel study for Adults with NF1 & cNFs

NFlection Therapeutics | 2023

Phase two trial is done. A phase three trial may open soon. Latest…

Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden in NF1

Ann & Robert H. Luries Childrens Hospital of Chicago | 2023
By Carlos Prada, MD

Recruiting NF1 individuals with known Plexiform Neurofibromas

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

University of Wisconsin-Milwaukee | 2021
By Bonnie Klein-Tasman, PhD

NF2 Research Studies and Trials

Efficacy and Safety of REC-2282 in Patients With Progressive Neurofibromatosis Type 2 (NF2) Mutated Meningiomas (POPLAR-NF2)

Recursion Pharmaceuticals Inc.

This is a parallel-group, two-staged, Phase 2/3, randomized, multi-center study to investigate the…

Johns Hopkins Various Clinical Trials

Johns Hopkins Comprehensive NF Center

Researchers at Johns Hopkins and around the world are investigating ways to slow…

NF2 SWN Clinical Trials (RECORDING)

2024 NF Midwest iNFO Fair | 2024
By Vanessa Merker, PhD

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

SWN Research Studies and Trials

Johns Hopkins Various Clinical Trials

Johns Hopkins Comprehensive NF Center

Researchers at Johns Hopkins and around the world are investigating ways to slow…

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

Participating in Research

Observational Research (RECORDING)

2024 NF Midwest iNFo Fair | 2024
By Vanessa Merker, PhD

Closed/Inactive Research

NF1 Genetics Study/ Closed

Stanford University, in collaboration with Johns Hopkins University and The University of California San Francisco (UCSF) | 2023
By Kavita Sarin, MD, PhD and Carlos Romo, MD

CLOSED:

Research Study To Understand Barriers To NF1 Care

Mass General Brigham | 2023

We want to learn more about your experiences looking for NF1 medical information…

Stakeholder perspectives on treatments for neurocognitive and behavioral concerns in RASopathies / closed

University of Minnesota | 2023

CLOSED: 07/2023

Online PEERS Study (Age 12-17 with NF1)/Closed

University of Wisconsin and Minnesota | 2022
By Bonnie Klein-Tasman, PhD

Children’s Attention Study Using EEG – Ages 7 to 11 WITHOUT NF1

University of Wisconsin-Milwaukee | 2021
By Bonnie Klein-Tasman, PhD

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

Research Trials and Studies

Research Studies and Trials

NF1 Research Studies and Trials

Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients.

Johns Hopkins Various Clinical Trials

My NF Guide Study RECRUITING!

Neural Underpinnings of Attention in Children with NF1

Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study-RECRUITING NOW.

NF1 Plexiform Neurofibroma Pain Scale Research Study

Topical Gel study for Adults with NF1 & cNFs

Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden in NF1

Resilient Youth Study (age 12-17 NF or SWN)

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

NF2 Research Studies and Trials

Efficacy and Safety of REC-2282 in Patients With Progressive Neurofibromatosis Type 2 (NF2) Mutated Meningiomas (POPLAR-NF2)

Johns Hopkins Various Clinical Trials

NF2 SWN Clinical Trials (RECORDING)

Resilient Youth Study (age 12-17 NF or SWN)

SWN Research Studies and Trials

Johns Hopkins Various Clinical Trials

Resilient Youth Study (age 12-17 NF or SWN)

Participating in Research

Observational Research (RECORDING)

Closed/Inactive Research

NF1 Genetics Study/ Closed

Research Study To Understand Barriers To NF1 Care

Stakeholder perspectives on treatments for neurocognitive and behavioral concerns in RASopathies / closed

Online PEERS Study (Age 12-17 with NF1)/Closed

Children’s Attention Study Using EEG – Ages 7 to 11 WITHOUT NF1

People Are Talking

Find NF Care

Be iNFormed

Community Support

Get the Latest NF News & Updates