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Diseases

Genetic and Rare Diseases Information Center (GARD)

Neurofibromatosis type 1


Other Names for this Disease
  • NF1
  • Type 1 neurofibromatosis
  • Recklinghausen's disease
  • Von Recklinghausen disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Neurofibromatosis type 1. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".

Patient Registry

  • The Children's Tumor Foundation, which advocates for research into neurofibromatosis (NF), launched an NF Registry in 2012. The purpose of this registry is to find people who may be eligible for clinical trials or other research studies being conducted in the field of neurofibromatosis and to determine the commonality of specific NF characteristics.
  • The Neurofibromatosis Type 1 Patient Registry Initiative (NPRI) is a unique internet-based database that collects medical information from individuals with NF1. Developed by researchers at the Washington University Neurofibromatosis Center, the NPRI is designed to help physicians and researchers better understand the spectrum of medical problems found in children and adults with NF1.
Other Names for this Disease
  • NF1
  • Type 1 neurofibromatosis
  • Recklinghausen's disease
  • Von Recklinghausen disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.