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Neurofibromatosis Midwest

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Archive for the “Research” Category

participate in research-01

Participate in an NF Quality of Life Survey

Researchers at Indiana University are creating a survey on how having NF1 affects people’s health and well-being. This tool will become an important part of testing potential treatments for NF1.

Who can participate?

Young Adults with NF1 (18-25y)

Children with NF1 (5-17y) (with parent permission)

Parents of children with NF1 (5-17y)

What will I be asked to do?  

We are asking Read the Rest…

NFRegistry

Sign Up for the Neurofibromatosis Registry

NF Midwest has partnered with CTF to promote the NF Registry.

The NF Registry is a database where anyone who has Neurofibromatosis (NF) Type 1, Neurofibromatosis Type 2, or schwannomatosis can register their contact information and include how NF or schwannomatosis affects them. This information will then be used to determine who may be Read the Rest…

participate in research-01

Participants Needed for NF1 Study on Coping with Pain

 Coping with Pain: an ACTive Approach

 

Do you have NF1 and one or more plexiform neurofibromas?
Do you have pain that has lasted three months or more?
Are you between the ages of 16 and 34 years?

 

If you answered yes to all these questions, you may be eligible for a new study at the National Cancer Institute in Bethesda, Read the Rest…

participate in research-01

Important Survey

The Department of Genetics at Stevenson University is conducting a survey on the psychological effects of “looking different” which was inspired by NF Mid-Atlantic with their series of interviews on the subject last year.

There has been so little research on the psycho-social ramifications of living with this incurable, variable, often disfiguring, and potentially Read the Rest…

participate in research-01

Children 9-13 with NF-1 Needed for Study

Bonnie Klein-Tasman, Ph.D and her team at the University of Wisconsin-Milwaukee are looking for children ages 9 to 13 with NF-1 to participate in a quick research study. The study will take about 4.5 hours and will help researchers learn more about the social, cognitive, and emotional abilities of children with neurofibromatosis-1.

It’s preferred that Read the Rest…

research

Neurofibromatosis Research Helping Scientists to Understand Autism

People with neurofibromatosis type 1 have a higher incidence of many different complications. Tumor growth and learning disabilities are especially prevalent, but NF1 also causes higher rates of bony abnormalities, seizures, pain, aneurysms and much more. For scientists, the mechanisms of NF1 and the NF1 gene offer great incite and understanding into the causes of Read the Rest…

be informed for posts-01

Volumetric Measurement of Tumors in Neurofibromatosis

At NF Midwest’s annual symposium in October 2014 we invited Eva Dombi, MD, from the National Cancer Institute to present information about how a newer technology called volumetric measurement is used to measure tumors in neurofibromatosis. The transcript from her presentation is now available online on our website.

What is Volumetric Read the Rest…