Neurofibroma (NF) Registry

Alternate Titles(s): NF Registry
UID: 10282
Description
This data contains information on patients with neurofibromatosis type 1 and neurofibromatosis type 2 and schwannomatosis. The neurofibromatoses (NF) are rare disorders with variation in clinical manifestations, and the NF Registry was created to assist researchers in studying the disease. Patients are included in the registry if they meet the diagnostic criteria for one of the three NF conditions. Participants complete questionnaires through the NF Registry website. The data includes information on demographics, family history, quality of life indicators, the clinical manifestations of NF conditions, and genomic characterizations. As of December 2016, the registry contains 7,371 registrants from 71 countries. Identifiable information will never be released to researchers.
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Access

Restrictions
Application Required
Instructions

To inquire about using the NF registry for patient recruitment, researchers must submit an outline of their proposed study or a clinical trial protocol synopsis to info@nfregistry.org.

To apply for access to the NF registry for data analysis, applicants will need to submit a Letter of Intent (LOI) to CTF for review. The LOI must contain a brief description of the planned study along with background, rationale, and any preliminary data; anticipated time frame of completion of the study; a list of collaborators and resources available, including grant support obtained or planned for the study; follow-up plans (if appllicable); and complete contact information for the PI. The LOI and a complete biographical sketch of the PI should be submitted to info@nfregistry.org. Review of the LOI typically occurs within four weeks.

Access via CTF

Application Information

Associated Publications
Data Type
Study Type
Observational
PubMed Search
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Other Resources
Questionnaires

Questionnaires given to registrants