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Clinical Trials/Studies Recruiting for Participants

ClinicalTrials.gov provides patients, their family members, and the public with easy and free access to information on clinical studies for a wide range of diseases and conditions.

SEARCH FOR A TRIAL

Age 40+ NF1
Genome Study

Participants age of 40 and over with NF1 needed for genome study. Goal is to identify the genetic mutations involved in developing cutaneous neurofibromas (skin tumors) AND other complications of NF1. Participants need to provide a saliva sample, photos, and complete a survey. No travel is involved. Enrolled participants will receive one year of access to their entire genome and a $25 gift card. To get to 1,000 participants we need to reach everyone with NF1 over 40 and to encourage their participation.

NF1 Pain Management
Mobile App Study

Adults with Neurofibromatosis Type 1 (NF1) and chronic pain are needed to participate in a clinical trial to evaluate mobile app for the management of chronic pain called iCanCope-NF. Participation in the study includes virtual visits with the study team over a 2-month period and a 6-week follow-up survey. Participants will be randomly assigned to one of three groups, two of which will have access to the mobile application. Upon completing the trial, participants will receive a gift card for their participation.

Register with the NF Registry at www.nfregistry.com. Registering with the NF Registry is an important tool in NF research to find a cure and treatments. The participation of NF patients is vital.

Register yourself or your child who has NF. By registering you will receive updates and/or invitations for studies and trials that you may be eligible for. Also, the information you provide may be shared anonymously with qualified researchers as a summary of patient data about NF symptoms.

JOIN THE NF REGISTRY

Online Harvard Study Seeking 12- 17 Year Olds with NF1

The Integrated Brain Health Clinical and Research Program at Massachusetts General Hospital is recruiting adolescents (ages 12-17) for a Resiliency for NF study. This study will be performed via Zoom. The study has no costs, no medication, and no travel.

Teens will learn stress and symptom management skills, earn $30 for participating, and help advance scientific research!

Selumetinib and Sirolimus for MPNST
Dr. AeRang Kim & Dr. Brigitte Widemann

For patients over age 12 with MPNST. See link for more detail. Locations include Children's National in Washinton, DC; National Cancer Institute in Bethesda, MA; Johns Hopkins in Baltimore, MD; Dana Farber Cancer Institute in Boston, MA; and Washington University in St. Louis, MO.

UW-Milwaukee
PEERS Telehealth
Study

Dr. Bonnie Klein-Tasman's group at the University of Wisconsin in Milwaukee is examining the effectiveness of a telehealth group for improving peer relationships for teens with NF1. This study is recruiting teens with NF1, ages 12 to 17, and their parents or caregivers. The teens and parents will participate separately in sessions designed to improve peer relationships and social skills.

UW-Milwaukee
EEG Attention Study

Dr. Bonnie Klein-Tasman's team at the University of Wisconsin in Milwaukee is recruiting three different groups for in order to learn more about learn more about your children's attention using electroencephalography (EEG).

Age 7 to 11 with NF1

Age 7 to 11 Unaffected

Age 7 to 11 with ADHD

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