Stanford Conducting Remote Study for Adults with NF1

Author: Stanford Medicine
Published On: 05/01/2022

Have an impact on the future of NF1 care.

Stanford Health Care is seeking participants for a free, remote genetic testing study. This research will study the genes of people with neurofibromatosis type (NF1) to help researchers understand why some are more likely to develop certain disorders, such as increased cutaneous neurofibromas (skin tumors present in 99% of people with NF1).

By participating in this research, you may learn:

  • If you carry any other concerning genetic mutations that could be passed down to your children or shared by other family members.
  • If you carry other genetic markers that could impact your health.

Study participants are eligible if you are 40 years or older, have been diagnosed with NF1, and currently have at least one cutaneous neurofibroma. This study is remote - you can participate from home anywhere in the United States!

If you choose to participate, you will be asked to complete a paper or online survey, send photographs of your skin to the researchers at Stanford, and provide a saliva sample to be used for genetic testing. You will receive a $25 Amazon Gift Card for your participation in this study, as well as the option to explore the results of your genetic sequencing.

To get started, click HERE or visit


For more information about the study, contact: (650) 497-8029 or For any questions about participant’s rights, contact 1-866-680-2906.

Want to view archived newsletters? Click Here!


Sign up to receive the latest neurofibromatosis news and information in your inbox!



Have a story you'd like to share with the NF community? Click Here!