Clinical Trial: Neurofibromatosis (NF) Registry Portal
Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]
Official Title: Neurofibromatosis (NF) Registry Portal Funded by Children's Tumor Foundation
Brief Summary: The NF Registry is a database of patient-reported experiences of living with neurofibromatosis. It also serves as a referral source for clinical trials.
Detailed 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 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 subgrou
Sponsor: The Children's Tumor Foundation
Current Primary Outcome: to determine the natural history of NF1, NF2, and schwannomatosis [ Time Frame: from registration until death ]
Original Primary Outcome: Same as current
Current Secondary Outcome:
Original Secondary Outcome:
Information By: The Children's Tumor Foundation
Dates:
Date Received: May 22, 2013
Date Started: June 2012
Date Completion: June 2050
Last Updated: December 30, 2016
Last Verified: December 2016
