Neurofibromatosis (NF) Registry Portal
The NF Registry is a database of patient-reported experiences of living with neurofibromatosis. It also serves as a referral source for clinical trials.
|Study Type:||Observational [Patient Registry]|
|Study Design:||Observational Model: Case-Only|
|Target Follow-Up Duration:||50 Years|
|Official Title:||Neurofibromatosis (NF) Registry Portal Funded by Children's Tumor Foundation|
- to determine the natural history of NF1, NF2, and schwannomatosis [ Time Frame: from registration until death ] [ Designated as safety issue: No ]patients will input medical information and treatment information about their NF and update at least yearly
|Study Start Date:||June 2012|
|Estimated Primary Completion Date:||June 2022 (Final data collection date for primary outcome measure)|
Patients with Neurofibromatosis 1
Patients with Neurofibromatosis 2
Patients with Schwannomatosis
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 the Agency for Healthcare Research and Quality's (AHRQ) Registry of Registries.
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 for the NF Registry is being done under contract with PatientCrossroads (San Mateo, CA), a state-of-the-art web-based patient opt-in registry that also performs this function for 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.
|Contact: Pamela B Knight, M.S.||212-344-6633 ext firstname.lastname@example.org|
|Contact: Annette Bakker, Ph.D.||212-344-6633 ext email@example.com|
|United States, New York|
|Children's Tumor Fundation||Recruiting|
|New York, New York, United States, 10005|
|Principal Investigator: Pamela B Knight, M.S.|