ARE YOU INTERESTED IN NF1 RESEARCH?
If so, there is a four year study of children's spines that might interest
you. The study is taking place in Utah, Cincinnati, England, and
Vancouver (Canada). Bone health problems are common in both children and
adults with NF1. Up to one-third of children with NF1 may have spine
problems that can result in scoliosis. Early detection and early therapy
may play a role in successful prevention or treatment.

The purpose of this study is to examine the frequency and clinical history
of spinal problems in children and the effectiveness of various methods of
screening for scoliosis.

WHO CAN PARTICIPATE IN THE STUDY?
Children may have scoliosis or may have a normal spine. Participants
must:

• be between 6 and 9 years old when first enrolled
• have had no previous surgical treatment of scoliosis
• have no signs of puberty
  

WHAT DOES THE STUDY INVOLVE?
There are various procedures involved in this study including a clinical
exam with a geneticist who is an NF expert, an MRI, a spine x-ray, a DXA &
pQCT (these are tests of bone density and bone architecture), and a urine
test. Not all the tests are done at all visits (the MRI is usually only
done at the first visit).

TIME INVOLVED
The entire study will take about half a day per year, for four years, at
the BC Children's Hospital, in Vancouver BC.

There is a travel allowance and small honorarium, and parents will be
given the results of all the testing for their child.

FOR MORE INFORMATION
If you are interested in learning more about the study, please contact
Patricia Birch at the University of British Columbia NF Research Lab
tel: 604-875-2000 ext 5622
email: birch@interchange.ubc.ca