Registry for patients with neurofibromatosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Diagnosed with NF1
* Diagnosed with NF2-related schwannomatosis
* Diagnosed with Schwannomatosis

Exclusion Criteria:

* Failure to complete account registration and consent

Where it's running

• 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Online program providing personalized NF1 care letters plus videos or peer navigator support for adults with low health literacy

  This study will test whether giving adults with NF1 and low health literacy personalized care letters plus either short, plain-language videos or a call with a trained peer navigator helps them better understand NF1 symptoms and care before their primary care visit.

  Recruiting Massachusetts General Hospital · Boston, Massachusetts · NCT07233408

• Understanding genetic causes of neuroendocrine tumors in Mexican patients

  This study is trying to find out the genetic changes that cause neuroendocrine tumors in Mexican patients to help develop better treatments.

  Recruiting at 3 sites Universidad Nacional Autonoma de Mexico · Mexico City, Mexico City and 2 other locations · NCT06523582

• Combination therapy to shrink plexiform neurofibromas in NF1 patients

  This trial tests whether the drugs cabozantinib and selumetinib can be safely given together to see if they help shrink progressive or painful plexiform neurofibromas in adolescents and adults with NF1.

  Recruiting at 8 sites Phase 1 University of Alabama at Birmingham · Birmingham, Alabama and 7 other locations · NCT06502171

• Study on the use of Koselugo for treating Neurofibromatosis 1

  This study is testing how well Koselugo works and how safe it is for people with Neurofibromatosis 1 in everyday treatment settings in South Korea.

  Recruiting at 9 sites AstraZeneca · Busan and 11 other locations · NCT06360406

• Monitoring for cancer risk in neurofibromatosis type 1 tumors

  This study is trying to find out which harmless tumors in people with neurofibromatosis type 1 might turn into cancer so that doctors can better monitor patients at risk.

  Recruiting National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT06222203

• Early selumetinib to try to prevent plexiform neurofibromas in young children with NF1

  This trial will see if giving selumetinib to young children with NF1 who are at high risk can prevent or slow the development of plexiform neurofibromas.

  Recruiting at 15 sites Phase 2 University of Alabama at Birmingham · Birmingham, Alabama and 14 other locations · NCT06188741

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.