RACE to Fight NF

#JoinTheRace with NF North Central to stop NF by learning more about the following:

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NF North Central Knock Out to Rock Out 2019


Did You Know?

The number of babies born with NF in the United States Every Day is 4

Other NF Studies

National Institutes of Health Clinical Trials

View all of the current clinical trials sponsored by the National Institutes of Health.

NF Consortium Clinical Trials

The NF Consortium is dedicated to conducting clinical trials to improve the quality of life of persons with Neurofibromatosis. The consortium consists of nine clinical centers around the U.S. To find out more about the clinical centers and clinical trials please visit the NF Consortium website.

NF Patients and Parents: Indiana University School of Medicine needs your help with a study.

Resiliency for NF Study – Looking for Participants

          Are you feeling stressed?

          Are your NF symptoms bothersome?

The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare 2 programs that teach stress andsymptom management skills for adults with NF1, NF2, or schwannomatosis.

The Department of Defense is paying for this study.

What does the study involve?

  • 8 group sessions led by an MGH psychologist with expertise in NF.
  • Completion of questionnaires on your own computer at the beginning, end, 6 months and 12 months after the sessions.
  • All sessions will take place from your home, using Vidyo, a secure software program you can use with a computer and a webcam to have live videoconferences, that we will help you install for free.
  • Sessions are 1.5 hours long and held once a week.This study DOES NOT involve taking medication.This study DOES NOT involve travel to MGH.

Who can participate?

  • We are looking for people ages 18 and older who have a diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis.

What are the benefits?

  • If you participate in this research study, you will learn stress and symptom management skills that you can continue to use after the study. You will also interact with other adults with NF like yourself.
  • There is no cost to participate in this study and your decision to participate will not affect your medical care.

How do I join?

  • If you would like to learn more about this research study, please contact: Study Coordinator, Christopher J. Funes at cjfunes@mgh.harvard.edu or Principal Investigator, Ana-Maria Vranceanu at avranceanu@mgh.harvard.edu.

Christopher and Ana-Maria thank you for considering their research study! You will be helping them gather important information about a training that may help other patients in the future.

Resiliency for NF Study

A research project to enhance stress and symptom management

Partners Human Research Committee – APPROVAL Effective Date 8/23/2017

New Study for NF1

Researchers at Indiana University are currently recruiting both parents and children with Neurofibromatosis Type 1 (NF1). Dr. Swigonski and her team are conducting a study to develop a health-related quality of life instrument for NF1 to better understand and measure how NF1 affects people’s health and well-being.

Eligibility Requirements:

Children ages 5-17y with NF1 & their parents

Young adults ages 18-25y with NF1 & their parents

Living in the United States

What does this study involve?

Simply answer surveys online


$10 gift card for every participant after completion of surveys

For more information, please contact us:

Email:  knutakki@iupui.edu

Phone: 317-278-0534

NF Patients and Parents: Indiana University School of Medicine needs your help with a study.

Researchers at IU are working on the development of a Neurofibromatosis Type 1 Quality of Life Instrument for children, adolescents and young adults ages 5-25 and requests your help in collecting data to see how well the instrument works.  They are looking for about 360 people to participate in field testing. To take part in field testing, you are required to answer surveys about NF1, how it affects your health and your general well-being.

The NF1 instrument for children, adolescents and young adults has gone through a rigorous process of development and now they need a large number of people ages 5-25 with NF-1 and their parents to fill out these surveys.  This is the next-to-the-last step in their process and allows them to do statistical analyses to look at how the instrument performs and to do reliability and validity testing (this would allow them to get rid of items that aren’t significant and to shorten the survey) and then develop the final instrument.

There are 4 versions of the survey:

1) Young child report, ages 5-7
2) Child report, ages 8-12
3) Teen report, ages 13-17
4) Young adult report, ages 18-25

They have parallel parent proxy reports for all 4 versions and would like both the child and parent to take the surveys.

Interested participants should contact Kavitha Nutakki at knutakki@iupui.edu or (317) 278-0534, she will mail the surveys to their address with a pre-paid envelope to send back the filled surveys.

Nancy Swigonski, MD, MPH
Kavitha Nutakki, MBBS, MPH

Development of a Child and Young Adult Neurofibromatosis Type 1 Health Related Quality of Life Measure

Health Information and Translational Sciences
Children’s Health Services Research 2000
410 W. 10th St., Indianapolis, IN 46202
Phone: (317) 278-0534

Washington University Neurofibromatosis Type 1 Patient Registry Initiative (NPRI)

The Neurofibromatosis Type 1 (NF1) Registry is a 30-minute questionnaire that will collect information to help doctors and researchers better understand the range of medical and social problems experienced by children and adults with NF1. If you have been diagnosed with NF1 or are the parent/guardian of a child (minor) with NF1, you are eligible to join this registry. The Washington University NF Center has employed state-of-the-art methods to protect your information, including storing all data on secure computer servers and obtaining a Certificate of Confidentiality from the National Institutes of Health (NIH). The information gained from your participation may one day help doctors develop personalized treatments that improve the quality of life for individuals living with NF1.

Click HERE to participate.

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, Maryland.

The study is evaluating an intervention called Acceptance and Commitment Training, or ACT, which has been found effective in other medical populations for decreasing how much pain interferes with daily life.  For this study, people will be asked to come to the NIH for a 2-day visit.  During this visit, they will fill out some questionnaires that ask about things like pain severity and emotional well-being. They also will get an electrocardiogram (ECG), which is a painless procedure that monitors heart rate. Next, we will randomly select (like flipping a coin) half of the people to do the ACT training right away. The other half will be put on a wait list for about two months, and then return to the NIH to do the training.

To learn more about the study view a printable flyer here, or contact Dr. Staci Martin or Dr. Taryn Allen at 301-496-0561, or email martins@mail.nih.gov or taryn.allen@nih.gov.

Adolescent NF Stress Study

This is a research project to learn about stress in adolescent NF patients, and to create new relaxation intervention.  The Family Center for Neurofibromatosis at Massachusetts General Hospital is conducting focus groups to learn about how stressed adolescent NF patients are and what their unique stressors might be.  The goal is to design an effective stress reduction and symptom management program for young patients with NF.

Click HERE for more information on the study and how to participate.

UCLA Neurofibromatosis Type 1 Research Study

Investigators have recently embarked on a study to further expand the knowledge of NF1 in humans. It is hoped that the information gathered from this study may help to develop treatments for the learning problems experienced by many people with the disorder.

This current research study, conducted by investigators, Carrie Bearden, Ph. D., Departments of Psychiatry and Biobehavioral Sciences and Psychology, Alcino J. Silva, Ph. D., Departments of Psychology, and Neurobiology, and Tena Rosser, M.D., Children’s Hospital Los Angeles, will examine the safety of lovastatin (medication used to treat high cholesterol) in people with NF1. Dr. Silva, a professor at UCLA Medical School, has been studying an animal model of NF1, and his group has made important findings regarding the use of lovastatin to treat some of the cognitive problems often reported by humans with NF1.

What Will Participation Include?
After an initial medical exam and blood test to determine eligibility, participation will include taking medication or placebo (pills without medicine), neuropsychological tests, 2-3 magnetic resonance imaging (MRI) sessions, social/emotional evaluation, and follow-up medical exams and blood tests. All procedures will be explained carefully, and all participation is completely VOLUNTARY. You may withdraw from the study at any time. There is no cost to be a participant.

Who May Be Eligible to Participate?
1. Individuals between the ages of 10-45 with a diagnosis of Neurofibromatosis Type 1
2. No history of any neurological disorders (such as epilepsy, encephalitis, etc.)
3. Not currently taking a cholesterol lowering medication and not suffering from high cholesterol
4. Not pregnant or nursing
5. No evidence of liver disease
6. No drug or alcohol abuse

Contact Information
If you are interested in finding out more about this research study, please call Nicole Enrique at (310) 825-3458 or email beardenlab.ucla@gmail.com (individuals under 18 must have their parents call.)

Neurofibromatosis Research Study for Adults: Learning More About Fractures in Adults with NF1

This is a research study to find out if people with neurofibromatosis type 1 (NF1) break their bones more often and have different types of broken bones (fractures) than those who do not have the condition. Adults 40-70 years old with NF1 and their spouses and/or siblings who do not have NF1 may be eligible to participate.

This study consists of completing a survey that is estimated to take a total of 20 minutes to complete. The survey contains questions about participants’ fracture history, physical activity, and diet. Specifically, the survey will ask participants to provide information about whether they have had a fracture (and, if so, how many, where they occurred, and how they healed).

More Information

University of Utah Clinical Genetics Research Program: Study Investigating Tibial Bowing

Investigators at the University of Utah are looking for individuals to participate in a research study investigating the clinical outcomes of tibial bowing and pseudarthrosis in neurofibromatosis type 1 (NF1)

The study includes:
– Medical history
– Blood and urine sample
– Ultrasound of the leg

Individuals with tibial bowing who qualify for the study will receive compensation for time lost.

Individuals will need to travel to the University of Utah for a one-day evaluation.  Costs for travel to the University of Utah will be provided per protocol for the individual and one accompanying parent/guardian.

For more information and/or to arrange to participate, please call Heather Hanson or Dr. David Stevenson at the University of Utah Clinical Genetics Research Program at 801-587-9017 or 801-581-4296 or 877-942-6600.

NF1 Plexiform Treatment Study

Indiana University School of Medicine and the Riley Hospital for Children are conducting pilot studies for treatment of NF1.  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 Physician and Researchers.

If you are interested in additional information about these studies, and want to see if you qualify, please contact:
Michelle Mellencamp, RN,
between 9 a.m. and 4 p.m., M-F

Development of a Neurofibromatosis Type 1 Quality of Life Study

Indiana University is looking for adult and youth volunteers to take a survey about NF1 and how it affects your health and well being.  This study will help to better understand how NF1 affects your health and well being, and help to measure how well treatments for NF1 are working.  We need adults with NF1, parents of children with NF1 and young adults 14 years and older with NF1. The study consists of an online survey about NF1, what it is like to have NF1 and how it affects health and well being.  The study is completely anonymous and does not require any personal information.  To take the online survey choose one of the following:

Adults with NF1
Parents of children with NF1
Youth 14 years or older with NF1

NF1 and Breast Cancer study

For the past several years researchers have suspected that there is a higher risk for breast cancer in individuals with NF1.  This research has now come to Michigan.  Dr. Xia Wang at Henry Ford Hospital isworking on a grant from the Department of Defence to study breast cancer in NF1.

If you or a family member with NF1 has had breast cancer, regardless of how long ago, please consider contacting Dr. Wang to help her gather data.  Simply email her at xwang1@hfhs.org.  She’ll send you all the information you need to decide whether you wish to participate.

You may also contact Dr. Wang by phone:

Xia Wang MD, PhD, FACMG
Department of Medical Genetics
Henry Ford Health System
3031 W. Grand Blvd., Ste. 700
Detroit, MI 48202
Tel   (313) 916-3188
Fax   (313) 916-1730

Medical Transition Survey

The Masters in Genetic Counseling program at the University of Maryland would like to invite you to participate in a research project that evaluates how individuals proceed through medical transition and the barriers they face.  The process of medical transition is one that individuals complete as they age and acquire skills to take responsibility for their condition.  This process often requires that individuals transfer care from a pediatric setting to an adult internal medicine care provider once the patient reaches a certain age. This study investigates the knowledge and experiences of individuals who are planning to undergo medical transition or who have done so within the last five to ten years (or been the care provider for someone who went through medical transition.)

You may access the survey at the hyperlink below.  It should take about 15 minutes to complete the survey.  Once completed, you may submit the survey online.


This project has received IRB approval from the University of Maryland IRB.  If you have any questions about the approval of this study, please contact the IRB at (410) 706-5037.  The study is completely anonymous in nature; no identifying information will be asked or required for survey participation and submission.  There are no anticipated risks associated with this study.  Your participation in this study is completely voluntary, but would be greatly appreciated and is important for the development of a medical transition clinic at the University of Maryland. You may choose not to participate in the survey at any time before or during your completion of the survey.

Please feel free to contact us with any questions or if you need assistance accessing the survey.  Your participation and contribution in the completion of this research study is greatly appreciated.

Shannan DeLany Dixon, MS, CGC
Director, Masters in Genetic Counseling Training Program
University of Maryland School of Medicine
660 West Redwood Street
Suite 570—Howard Hall
Baltimore, MD 21201
(410) 706-4713

Washington University’s NF Center Launches a DNA Bank for Future Genetic Research

The Washington University Neurofibromatosis (NF) Center has established a one-of-a-kind NF1 DNA Bank that will collect blood samples from individuals with NF1.  The 5 mL blood samples will be used to extract DNA for future research aimed at identifying children at greatest risk for specific medical problems associated with NF1. Participants are also asked to fill out a short questionnaire. The information gathered from the questionnaire and medical record (if available) is then linked to the participant’s DNA on a secure server at The Washington University School of Medicine.

With advancing technology in the field of genome science, scientists and physicians at the NF Center are working together to determine how subtle changes in our DNA lead to the wide variety of medical problems seen in people with NF1.  Knowledge gained form these studies will help doctors and scientists better predict who will develop these problems, and may lead to the design of more effective drug therapies.

Blood is taken in the outpatient lab at St. Louis Children’s Hospital at no cost to the participant.  All family members with a diagnosis of NF1 are encouraged to give blood.  Arrangements can also be made to obtain blood samples drawn at locations other than St. Louis Children’s Hospital.

Interested families should contact Team NF at NFClinic@neuro.wustl.edu.

Washington University’s NF Center Launches Internet-based NF1 Registry

The Washington University Neurofibromatosis (NF) Center is launching a unique internet-based NF1 Registry that will collect medical information to help physicians and researchers better understand the spectrum of medical problems found in children and adults with NF1.  All individuals with a diagnosis of NF1 are eligible to complete the 30-minute online questionnaire.

The information collected from the NF1 Registry will be used to better characterize the relationships between specific problems in NF1.  In particular, researchers hope to better understand correlations between NF1 and cancer, heart problems, allergies, depression, and learning disabilities.  The Washington University NF1 Registry will enable studies that aim to identify children and adults at greatest risk for specific medical problems in NF1.  These studies may help clinicians to develop personalized treatment strategies that improve the quality of life for individuals living with NF1. All information is housed on a secure server in compliance with established HIPAA guidelines.

To access the registry, simply go to the NF Center homepage and click on the “NF1 Registry” gold icon on the bottom left side of the screen.

NFRP Consumers Making a Difference: Bev Oberlander

The CDMRP highlights personal stories of NFRP Consumers Making a Difference.  Take a moment to read the personal story of Bev Oberlander.

You also learn about the CDMRP NF research program, view and read Bev’s and other stories by going to the CDMRP website.

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 Moertel of the University of Minnesota Department of Pediatrics.

Participants must have a confirmed diagnosis of NF1 and Scoliosis.

For further information please contact:

Ivana Ninkovic, MPH MS
Spine Clinical Research Coordinator
Tel. 612-273-8082
Email: nink0002@umn.edu


Charles Ledonio, MD
Email: nink0002@umn.edu