NF Registry training for Volunteers

Post date: Jul 5, 2017 4:39:55 PM

If you have agreed to volunteer at an event, which promotes the NF Registry, by handing out information and answering questions, please complete this training in advance of your service.

1. Watch this informational video prepared by Kate Kelts, Patient Support Coordinator for CTF:

2. Print a copy of the NF Registry Talking Points (linked below) to review and take with you.

3. Familiarize yourself with www.nfregistry.org, especially the NF Registry FAQ, signing in or creating an account, and how to find clinical trials. Although you will not be asked to sign patients up for the registry, it will be helpful to know how to do it if someone has a question.

4. If you are asked any specific questions regarding a patient's account, other than basic troubleshooting such as, "How do I know if I'm registered?" please refer to: nfregistry@patientcrossroads.org.

5. You may also want to practice answering questions that you may get with a friend or family member. Additional FAQs can be found here: http://www.ctf.org/understanding-nf/nf-registry

Troubleshooting:

• How do I know if I'm registered?
  • Ask the patient to try to sign in using an email address and click on "Forgot my password." If there is an account registered to that email, a reset link will be sent to the account. If there is not an account registered to the email, the patient has not yet registered (unless there are other email addresses to check).