Participate in NF research

Author: Heather Lipp
Published On: 6/30/17

National Institutes of Health (NIH) conducts clinical research trials for many diseases and conditions, including cancer, Alzheimer’s disease, allergy and infectious diseases, and neurological disorders. Did you know that there are 167 clinical trials for neurofibromatosis (NF) in various stages of completion? People with NF can play a critical role in the development of new treatments and the search for a cure by participating in clinical trials.

A clinical trial/study is conducted according to a research plan known as the protocol. The protocol is designed to answer specific research questions and safeguard the health of participants. It contains the following information:

  • The reason for conducting the study
  • Who may participate in the study (the eligibility criteria)
  • The number of participants needed
  • The schedule of tests, procedures, or drugs and their dosages
  • The length of the study
  • What information will be gathered about the participants

Like our friend, Carter. Carter is participating in the Natural History Study and Longitudinal Assessment of Children, Adolescents, and Adults with Neurofibromatosis Type 1, whose principal Investigator is, Dr. Brigitte Widemann. Carter first started participating in October 2009, he was only 6 years old then, he’s 15 now and is still participating, 9 years later.

The ClinicalTrials.gov Web site provides current information about clinical research studies to patients, their families and caregivers, health care professionals, and the public. To learn more about participating, click here.


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