NF Research Opportunities

Consider participation in research and studies to further the knowledge about NF.  Some of these require very little of your time and include:
 
Learning Disabilities Trial
A trial on the effectiveness of Lovastatin, a common cholesterol lowering medicine is ongoing at several NF clinics nationwide. 

NF1 Patient Registry and Genome Project 
The Washington University NF Center has a 30 minute questionannaire for NF patients. They are also collecting blood samples from individuals with NF to learn more about the genetics of the disorder in their genome project.

Quality of Life Study
Indiana University is conducting an NF1 quality of life study. Online surveys can be filled out at:

Adults with NF1: www.surveymonkey.com/s/NF1-Adultsurvey
Parents of children with NF1: www.surveymonkey.com/s/NF1-Parent
Youth 14 years or older with NF1: www.surveymonkey.com/s/NF1-teen
 
Early Development Study
The University of Wisconsin in Milwaukee (Bonnie Klein-Tasman, Ph.D.) is looking for children with NF ages 3 to 6 to participate in a study of Early Development in children with NF1. Call 414.229.2586.

Schwannomatosis International Database
If you have schwannomatosis be sure to check out schwannomatosis.com where you'll find out about the International Database project for schwannomatosis.

Breast Cancer NF1 Study
Dr. Xia Wang at Henry Ford Hospital in Michigan is studying breast cancer in NF1. If you or a family member with NF1 has had breast cancer call 313.916.3188 or email xwang1@hfhs.org to find out more about participating.

This was excerpted from the Fall 2011 NF Midwest newsletter (click the link for the full newsletter).