Registry for patients with neurofibromatosis
Neurofibromatosis (NF) Registry Portal Funded by Children's Tumor Foundation
The Children's Tumor Foundation · NCT01885767
This study is creating a registry for people with neurofibromatosis to share their symptoms and experiences, helping connect them with clinical trials and improving understanding of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20000 (estimated) |
| Sex | All |
| Sponsor | The Children's Tumor Foundation (other) |
| Locations | 1 site (New York, New York) |
| Trial ID | NCT01885767 on ClinicalTrials.gov |
What this trial studies
The Neurofibromatosis (NF) Registry Portal is an observational database that collects patient-reported symptoms, treatments, and experiences related to neurofibromatosis types 1 and 2, as well as schwannomatosis. Patients and their guardians can enroll through a web-based portal, where they complete surveys about medical history, clinical manifestations, and quality of life. The registry aims to connect patients with relevant clinical trial opportunities and provide de-identified data to researchers for further study. It serves as a potential natural history resource for understanding these conditions better.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with Neurofibromatosis type 1, type 2, or schwannomatosis.
Not a fit: Patients who do not complete the account registration process will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of neurofibromatosis and improve access to clinical trials for patients.
How similar studies have performed: Other registries for rare diseases have shown success in improving patient outcomes and facilitating research, indicating a positive precedent for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosed with NF1 * Diagnosed with NF2 * Diagnosed with Schwannomatosis Exclusion Criteria: * Failure to complete account registration
Where this trial is running
New York, New York
- Children's Tumor Fundation — New York, New York, United States (RECRUITING)
Study contacts
- Principal investigator: Kate Kelts, B.S.N. — The Children's Tumor Foundation
- Study coordinator: Kate Kelts, B.S.N.
- Email: kkelts@ctf.org
- Phone: 646-738-8567
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Neurofibromatosis 1, Neurofibromatosis 2, Schwannomatosis, Neurofibromatosis, NF, NF1, NF2