The NF Registry is a database of patient-reported symptoms, treatments, and experiences with their neurofibromatosis disease. It is a contact registry to relay clinical trial opportunities to targeted patient subgroups, and to supply de-identified disease data to researchers. It has the potential to become a natural history resource.
Neurofibromatosis 1, Neurofibromatosis 2, Schwannomatosis
The NF Registry is a database of patient-reported symptoms, treatments, and experiences with their neurofibromatosis disease. It is a contact registry to relay clinical trial opportunities to targeted patient subgroups, and to supply de-identified disease data to researchers. It has the potential to become a natural history resource.
Neurofibromatosis (NF) Registry Portal
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Children's Tumor Fundation, New York, New York, United States, 10017
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
For general information about clinical research, read Learn About Studies.
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The Children's Tumor Foundation,
Kate Kelts, B.S.N., PRINCIPAL_INVESTIGATOR, The Children's Tumor Foundation
2050-06