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.
- Publisher
Access
- Restrictions
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Application Required
- Instructions
To inquire about using the NF registry for patient recruitment, researchers must submit an outline of their IRB-approved proposed study or a clinical trial to
De-identified data may also be requested from the NF registry for data analysis For more information, requesters can reach out to
Observational
- PubMed Search
- View articles which use this dataset
- Other Resources
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Questionnaires
Questionnaires given to registrants
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