NF1 Genome Project

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

To participate, individuals are asked to give a 5 mL (about a teaspoon) blood 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 The Washington University School of Medicine.

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.

Blood is taken in the outpatient lab at St. Louis Children’s Hospital 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 Team NF at NFClinicalStudies@neuro.wustl.edu.