NF Registry

The NF Registry was created in 2012 by the Children’s Tumor Foundation. It is administered by Invitae, which also maintains 250 other rare disease registries. Both the Foundation and Invitae are committed to maintaining the highest standards of data security and confidentiality.

Volunteer involvement in the Registry

Volunteers have an important role in helping us achieve our goal of enrolling 10,000 individuals with NF (we are well over halfway there)! Volunteers can assist in clinics (see NFCN) or at events to provide information to families.

The NF Enrollment process

• • A short 5 minute registration can be done to create a username and password. The family can then complete the survey at a later time. This works especially well when time is limited during an event.

  • Questions of the Registry include demographics, diagnosis, symptoms, testing and interventions.

  • Once an individual is registered, as studies become available, they may receive emails about research studies for which they might match the criteria. The individual can then consult with his or her doctor to decide whether to contact the researcher and consider involvement in the study.

Some things to remember about the NF Registry:

• • A committee called an Institutional Review Board (IRB) has thoroughly reviewed and approved the NF Registry. IRBs approve any research involving human subjects to ensure that the research is conducted in accordance with all federal and ethical guidelines.

  • Enrollment in the Registry is completely voluntary; no individual should feel coerced to participate in the Registry.

  • The Registry includes individuals with NF1, NF2 or schwannomatosis.

  • Individuals under age 18 can be enrolled by their parent or legal guardian.

  • Data is entered voluntarily by the patient and updated on an annual basis.

  • All information that a volunteer might learn during the enrollment process must be considered confidential and not shared with others.