News & Research

Information for NF Researchers

The NIH Guide to Grants and Contracts is issued every Friday and is the official publication for research grant policies, guidelines, and funding opportunities.

Opportunities to Participate in Clinical Trials

Researchers are hard at work trying to understand NF more fully and to find treatments to improve the lives of those with NF. Their studies frequently require participation from affected individuals. The “trials” listed here are opportunities for the NF community to assist in these research projects. All research benefits the NF community as a whole; in the case of drugs being tested, there is also the hope and possibility that the NF participant may personally benefit. Drug trials are normally limited to individuals with specific (and usually severe) symptoms.

Clinical Trials Sponsored by the National Institutes of Health

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