NF1 Genome Project

The Washington University NF Center has established the NF1 Genome Project (NF1GP), a one-of-a-kind DNA bank that collects blood or saliva samples from individuals with NF1. The samples will be used to extract DNA for future research at the Washington University NF Center aimed at identifying children at greatest risk for specific medical problems associated with NF1.

View the video below for more information about the project.

About the NF1GP

With advancing technology in the field of genomic science, scientists and physicians at the NF Center are working together to determine how subtle changes in our DNA lead to the wide variety of medical problems seen in people with NF1. Knowledge gained from these studies will help doctors and scientists better predict who will develop these problems, and may lead to the design of more effective drug therapies.

To date, over 500 individuals with NF1 have participated in the NF1GP. Help us reach our goal of 1,000!

Participating in the NF1GP

To participate, individuals are asked to give a 5 mL (about a teaspoon) blood or saliva sample and to fill out a short questionnaire. The information gathered from the questionnaire and medical record (if available) is then linked to the participant’s DNA on a secure server at Washington University School of Medicine.

Blood is taken in the outpatient lab at St. Louis Children’s Hospital, or by our NF Clinical staff during an office visit, at no cost to the participant. All family members with a diagnosis of NF1 are encouraged to give blood.

At this time we cannot accept blood samples that are not drawn at St. Louis Children’s Hospital. If you would like more information, please contact the research team at