Get Involved In Research

Getting Involved In Research

In order to develop better ways to care for people affected with NF, we need a better understanding of the condition.  We, at the Washington University NF Center, are recruiting families to participate in ongoing clinical research studies.  Your involvement in these studies will accelerate the pace at which new treatments are developed.   You can also click here to learn more about The Washington University NF Center Research Symposium in the Spring of 2012.

Below is a list of active medical research studies available in the Washington University NF Center:

 

NF1 Genome Project
The Washington University Neurofibromatosis (NF) Center has established a one-of-a-kind NF1 Genome Project which 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.  For more information, click here.

 

NF1 Patient-Directed Registry
The Neurofibromatosis Type 1 (NF1) Registry is a 30-minute questionnaire that will collect information to help doctors and researchers better understand the range of medical and social problems experienced by children and adults with NF1. If you have been diagnosed with NF1 or are the parent/guardian of a child (minor) with NF1, you are eligible to join this registry. The information gained from your participation may one day help doctors develop personalized treatments that improve the quality of life for individuals living with NF1. For more information, click here.

 

Sleep Disturbances in NF1
Dr. Amy Licis is leading a study to define the types of sleep problems seen in individuals with NF1.  Dr. Licis is a pediatric neurologist and specialist in sleep disturbances.  Your participation involves answering questions as part of your routine visit to the NF Clinical Program at St. Louis Children’s Hospital.

 

Short Stature in NF1
Dr. Abby Hollander is leading a study to determine how best to identify children with NF1 whose short stature might be caused by a growth hormone deficiency.  Dr. Hollander is a pediatric endocrinologist.  Your participation involves getting your family’s height measured as part of your routine visit to the NF Clinical Program at St. Louis Children’s Hospital.

 

Developmental Delays in Children with NF1
Dr. Courtney Dunn is leading a study to define the types of delays that affect children with NF1.  The purpose of this study is to identify children who would benefit from therapy services.  Dr. Dunn is an experienced pediatric physical therapist.  Your participation involves being evaluated by Dr. Dunn as part of your routine visit to the NF Clinical Program at St. Louis Children’s Hospital.

 

Café-au-lait Macules in Children with NF1
Dr. Monique Gupta is leading a study to determine how best to use the number and shape of café-au-lait macules (birthmarks) to predict which children with birthmarks will develop NF1.  Your participation involves a short evaluation by Dr. Gupta as part of your routine visit to the NF Clinical Program at St. Louis Children’s Hospital.

 

Hypotonia and Brain Tumors
Dr. Courtney Dunn is leading a study to determine whether decreased tone in young children with NF1 is associated with brain tumors.  The goal of this study is to identify better methods for finding children most at risk for brain tumor development.  Your participation involves a short evaluation by Dr. Dunn as part of your routine visit to the NF Clinical Program at St. Louis Children’s Hospital.

 

Attention Deficit in Children with NF1
Dr. Jill Isenberg is leading a study to define the spectrum of attention deficit issues facing children with NF1.  Dr. Isenberg is an experienced pediatric neuropsychologist interested in developing assessment tools for identifying children most at risk for attention deficit.  Your participation involves a one-hour test by Dr. Isenberg or one of her associates.  If you are interested, please let us know.

 

Vision and Optic Pathway Gliomas in NF1
Dr. Joshua Shimony in the Washington University Neurofibromatosis Center is currently conducting a study to help improve our ability to detect changes in the visual system of children with NF1.  Using advanced imaging techniques, optic gliomas in children with NF1 will be studied using diffusion tensor imaging and functional MRI.  The goal of this study is to better predict vision loss that results from optic glioma growth.  The study will not require any additional MRI scans, since the advanced imaging techniques will be added to MRI scans obtained as part of routine clinical care.  For further information on this study please contact:  Angela Campbell (314-747-2012).

 

Treatment Trials in NF1 and NF2
Ongoing drug treatment trials are ongoing at the Washington University NF Clinical Program as part of the Department of Defense NF Clinical Trials Consortium.  You should speak with members of your NF clinical care team about participating in these clinical studies.