UPDATE: Clinical Research Studies at the Washington University NF Center – Summer 2014
July 24, 2014
Curious how our current clinical studies are going?
NF1 Genome Project (NF1GP)
We have obtained 405 blood samples from individuals with NF1 and have begun using some of the samples in new studies. These include a study looking at the differences in DNA between people with NF1 who develop brain tumors and people with NF1 who do not develop brain tumors as well as a study looking at how DNA might affect the number of dermal neurofibromas a person with NF1 develops.
NF1 Patient Registry Initiative (NPRI)
1750 individuals with NF1 have registered and completed questionnaires for the NPRI. Individuals from all 50 states, the District of Columbia and 47 countries have participated. We are still recruiting! If you are interested in participating, or you know someone who is interested, please go HERE.
Social and Behavioral Health in NF1
110 individuals have participated and data is being prepared for analysis.
Hypotonia and Brain Tumors
10 children with NF1 have participated in this study. We are still recruiting! Children between the ages of 0 and 7 will be evaluated for hypotonia in clinic and those eligible will be approached to consider participating.
NF1 Brain Trust Project (NBTP)
15 individuals have donated skin samples to this study. We are still recruiting!
Maternal Folate Metabolism and Brain Tumors
60 families have completed this study and data is currently being analyzed.