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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Participate in Research

To Move our Knowledge of NF Forward Many People are Needed to Participate in Research.

 There are many ways to participate in neurofibromatosis research. Some may be more invasive such as a clinical trial testing a medication. Some may simply involve answering questions or letting a researcher examine you and follow your case. Some research may provide the benefit of extra care and expertise and may provide vital testing such as MRIs at no cost to the patient. All research advances our understanding of neurofibromatosis to lead to better treatments, more knowledge of how a patient may be affected, and to an eventual cure.

How can I participate in research?

  • Go to clinicaltrials.gov and research the various clinical trials for neurofibromatosis or schwannomatosis.
  • Register at researchmatch.org and you will be contacted if there is ever a trial that you might be eligible for.
  • Tell your NF doctor that you are interested in learning more about clinical trials or research studies.
  • Keep abreast of opportunities that may be listed on this site or through social media.

CLINCIALTRIALS.GOV RESEARCHMATCH.ORG
HIGHLIGHTED TRIALS/STUDIES

Why should I participate in a research?

  • Participation in research advances our understanding of neurofibromatosis and schwannomatosis to better understand the course of the disorder.
  • Of course, research leads to better treatments and hopefully an eventual cure.
  • Enrolling in a study might give you or your child a chance to see extra doctors or find out more facts about you or your child’s condition. A study may also be able to put you in touch with families going through what you are going through.
  • A clinical study may offer closer monitoring or additional testing for you or your child, which may not be part of regular care.

WHAT SHOULD I KNOW BEFORE PARTICIPATING IN RESEARCH?