Neurofibromatosis Type 1 (NF1) Registry Frequently Asked Questions
How do you know if you have NF1?
NF1 is diagnosed by a doctor based on a number of signs, including the
presence of six or more birthmarks called café au lait macules, freckling
in the armpits and groin, pigmented growths on the iris (the colored
portion of the eye; Lisch nodules), neurofibromas (benign tumors on or
underneath the skin or inside the body), brain tumors that arise in the
visual pathway (optic gliomas), bone abnormalities, and a family member
(mother or father) with NF1. For more information on NF1, please visit The
Washington University NF center website: http://nfcenter.wustl.edu.
How can I learn more about NF1?
The Washington University Neurofibromatosis (NF) Center hosts a website
with educational materials, resources, and information about NF1. Please
visit this site at http://nfcenter.wustl.edu.
I have heard that both the Children’s Tumor Foundation and Washington University have NF registries. What are the major differences between the two registries?
The Washington University NF1 Patient Registry Initiative (NPRI)
) is a unique internet-based research
database that collects medical information from individuals with NF1 to
help physicians and researchers better understand risks for cancer and
other health outcomes in children and adults with NF1. The information
gained from these studies may one day help clinicians to develop
personalized treatment strategies that improve the quality of life for
individuals living with NF1.
The Children’s Tumor Foundation (CTF) NF Registry
) is a patient-driven tool designed to speed
recruitment of NF patients, including those with NF1, NF2, and schwannomatosis, for clinical trials. This Registry will review as many
actively recruiting NF clinical trials or clinical research studies as possible.
Using information entered into the database, the NF Registry will seek to
match patients with the trials most suitable for them, and to facilitate the
connection with the trial team.
The questionnaire asks for the name of an NF1 specialist. What if I
don’t have an NF1 specialist?
If you do not have an NF1 specialist, you may leave this section of the
Are there any resources to help with finding an NF1 specialist?
The Children’s Tumor Foundation has compiled a list of NF specialists in the
United States and internationally that can be accessed at the link: http://www.ctf.org/Patient-Information/Find-a-Doctor.html
How can I contact the NF1 Registry team?
You can contact us by email at firstname.lastname@example.org
can call us at the numbers below:
Kimberly Johnson, MPH, PhD
NF1 Registry Director
Which doctor do I need to list on the Authorization for Release of
Medical Information form?
List the doctor you visit most often for your NF1. You can also list the name
of a clinic or hospital where you have been a patient if you do not have a
How can I electronically send my Authorization for Release of Medical
The form can be scanned and emailed to
Alternatively, you can request that a
copy be sent to you with a postage paid business reply envelope.