New York, New York 10005


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.

Study summary:

Patients and parents of patients will be made aware of the Neurofibromatosis (NF) Registry through various non-commercial information sources such as the Children's Tumor Foundation (CTF) website, CTF-affiliated NF clinics, CTF educational and fundraising events, and other nonprofit organizations and foundations such as the National Organization for Rare Diseases (NORD) and social media. The NF Registry will be accessed by individual subjects via a web-based patient portal. The portal first provides informed consent information. Following consent, the registrant creates an account by choosing a unique username and password. An account can be created by an adult patient with the disorder, or by the parent or guardian of a child with the disorder. Account creators are required to enter identifiable contact and demographic data. After the account is created, a patient profile can be completed via on-line questionnaires. There are separate questionnaires for NF1, NF2, and Schwannomatosis. The questionnaires ask about about the affected individual's medical and family history of the disease, testing and diagnosis, clinical manifestations (e.g., tumor types and locations) interventions and therapies, and quality of life. They also ask permission from the patient or his or her parent or guardian to be contacted by email (via CTF) in regard to relevant clinical trials and studies. Participant's responses are used to compile charts and graphics of de-identified aggregate data. Registered patients may view this data. Researchers may request access to de-identified data. They may also request that CTF send emails of study recruitment materials to specific patient subgroups. Data capture and security for the NF Registry is done under contract by Invitae Corp. (San Francisco, CA), a web-based patient opt-in registry provider that also hosts 250 other rare disease registries. Participants will be asked to update their information at least once a year. Their information will be stored in the NF Registry for an indefinite period of time. This longitudinal study is intended as a resource for patients and researchers. There is no specific outcome measure or anticipated endpoint.


Inclusion Criteria: - Diagnosed with NF1 - Diagnosed with NF2 - Diagnosed with Schwannomatosis Exclusion Criteria: - Failure to complete account registration



Primary Contact:

Principal Investigator
Pamela B Knight, M.S.
The Children's Tumor Foundation

Pamela B Knight, M.S.
Phone: 212-344-6633 ext. 8555

Backup Contact:

Annette Bakker, Ph.D.
Phone: 212-344-6633 ext. 7029

Location Contact:

New York, New York 10005
United States

There is no listed contact information for this specific location.

Site Status: Recruiting

Data Source:

Date Processed: January 21, 2020

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