Follow us on Twitter Visit us on Facebook! Check out our pins on Pinterest

Neurofibromatosis Midwest


Archive for the “Clinical Trials” 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…


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

Neurofibromatosis (type1) study for ages 15 to 19

The Genetics Division at the Faculty of Medicine and Health Sciences from Université de Sherbrooke in Québec has opened a new research study for young adults between the ages of 15 and 19.

The survey is called  NF and Me: What I Need to Know and What I Have to Say About My Health, Privacy and Read the Rest…

participate in research-01

NF1 and Scoliosis Genetic Study

Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis

Participants are needed for  a study entitled: Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis. The study is being conducted by Dr. David W. Polly, Jr. of the University of Minnesota-Department of Orthopaedic Surgery and Dr. Christopher Read the Rest…

participate in research-01

NF1 and Breast Cancer Study

Call for Study Participants

The Department of Medical Genetics at Henry Ford Hospital in Detroit, MI is conducting a study to evaluate the genetic and molecular characteristics of breast cancer in NF1 patients. We are looking to recruit men or women with NF1 who also have a history of breast cancer. Potential participants would be Read the Rest…


Neurofibromatosis Type 2 Study Survey

A neurofibromatosis type 2 researcher is looking for people who have been diagnosed with NF2 and have hearing loss to participate in a brief survey about communication.

The online survey will take approximately 10 minutes to complete. Participation in this survey is voluntary. It is not necessary to answer every question and you may discontinue Read the Rest…

participate in research-01

Schwannomatosis International Database

A consortium of medical institutions is collecting limited information on schwannomatosis patients. This includes their symptoms, their management and medication, and whether receiving ongoing treatment, no treatment, or deceased. They hope that the information collected will help improve how patients are cared for, with the goal of understanding more about the symptoms of schwannomatosis Read the Rest…

NF Registry

NF Registry

If you or your child has been diagnosed with neurofibromatosis (NF) please join the NF Registry today. The key to treatments lies within you – researchers can’t deliver treatments without committed volunteers.

Sponsored by the Children’s Tumor Foundation, the NF Registry’s mission is to identify people with NF who are interested in participating in Read the Rest…

participate in research-01

Quality of Life Study – Easy Online Survey

Indiana University is conducting a NF1 quality of life study. This study will help us to better understand how NF1 affects the patient’s health and well being. It will also help measure how well new treatments for NF1 are working. If you are an adult with NF1, a parent of a child with NF1, Read the Rest…

participate in research-01

NF1 Washington University Registry

The Washington University Neurofibromatosis (NF) Center has launched a unique internet-based NF1 Registry, which is a 30-minute questionnaire. This questionnaire will collect medical information to help physicians and researchers better understand the spectrum of medical problems found in children and adults. They have also established a one-of-a-kind NF1 Genome Project which is a DNA Bank Read the Rest…