Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
20000 participants
OBSERVATIONAL
2012-06-30
2050-06-30
Brief Summary
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Detailed Description
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The NF Registry will be accessed by individual adult (over age 18) subjects via a web-based patient portal. The portal contains an IRB-approved informed consent form. Following consent, the registrant creates an account which is activated after email confirmation. 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, the account owner enrolls themselves or a minor family member (or both) and completes an on-line survey. There are separate surveys for NF1, NF2, and Schwannomatosis. The surveys 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. The account holder chooses whether to receive emails from the Registry with information about relevant clinical trials and studies for which they may be eligible.
Participant's responses are used to compile charts and graphics of de-identified aggregate data. Registered patients may view this data. Researchers may apply to our Data Use Committee for access to de-identified data or for subject recruitment emails to be sent to specific patient subgroups. Data capture and security for the NF Registry is done under contract by OpenApp (Dublin, Ireland), a web-based patient opt-in registry provider.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.
Conditions
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Study Design
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CASE_ONLY
OTHER
Study Groups
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NF1
Patients meeting clinical and/or genetic criteria for Neurofibromatosis 1
No interventions assigned to this group
NF2
Patients meeting clinical and/or genetic criteria for Neurofibromatosis 2
No interventions assigned to this group
SchW
Patients meeting clinical and/or genetic criteria for Schwannomatosis
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* Diagnosed with NF2
* Diagnosed with Schwannomatosis
Exclusion Criteria
ALL
No
Sponsors
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The Children's Tumor Foundation
OTHER
Responsible Party
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Principal Investigators
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Kate Kelts, B.S.N.
Role: PRINCIPAL_INVESTIGATOR
The Children's Tumor Foundation
Locations
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Children's Tumor Fundation
New York, New York, United States
Countries
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Central Contacts
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Related Links
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NF Registry
Other Identifiers
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CTF001
Identifier Type: -
Identifier Source: org_study_id
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