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…
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…
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…
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…
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…
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…
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…
In 2012 House Research Institute will sponsor a three-year, Phase II clinical trial, evaluating the efficacy of the drug RAD001 (otherwise known as everolimus). Following an identical protocol, the clinical trial will be conducted simultaneously in Los Angeles, California, and Paris, France. In Los Angeles, the trial will be under the direction of Dr. Giovannini. Read the Rest…
The University of Wisconsin Milwaukee Dept. of Psychology (Bonnie Klein-Tasman, Ph.D.) is collaborating with the University of Chicago NF Program and Children’s Hospital of Wisconsin NF Clinic to learn about the cognitive, learning, and behavioral functioning of young children with NF1. They are looking at the functioning of 3 to 6-year-olds with NF1 as well Read the Rest…
If you have Type 1 Neurofibromatosis with Plexiform Neurofibromas you may be interested in NF1 Plexiform treatment studies for children and adults being developed by Riley Hospital Physicians and researchers in partnership with Indiana University School of Medicine physicians and researchers. For more information about these studies and to see if you qualify, please contact Read the Rest…
