CLINICAL TRIALS

PARTICIPATE IN RESEARCH

Resiliency for NF Study

Resiliency Study for NF looking for participants! 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 and symptom management skills for adults with NF1, NF2, or schwannomatosis. For more information on this study and to participate click here or Watch this video.

 

Impacts of Social Media on Self-Esteem Among Individuals with Neurofibromatosis

WHO CAN PARTICIPATE: Adult patients ( 18 and older) with NF1 or NF2

OBJECTIVE: Understand the effect of social media and support groups on self-esteem and feelings of isolation

CONTACT: To participate or obtain more information, please contact Rivka Glaser, Ph.D., at 448-394-9644 or rglaser@stevenson.edu. Click here for more information and to participate in this research study.
 

NF1 Associated Plexiform Neurofibromas Survey Project

WHO CAN PARTICIPATE: Parents of children between the age of 8 and 17 with NF1 and a plexiform tumor

OBJECTIVE: Understand the health-related quality of life of individuals with NF-1 associated plexiform neurofibromas and to learn about their experiences

CONTACT: To participate or obtain more information, please contact Zabin Patel, at 312-503-3424 or z-patel@northwestern.edu.

Click here for more information about this research study.
 

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

WHO CAN PARTICIPATE: Young Adults with NF1 (18-25), Children with NF1 (5-17), and Parents of children with NF1 (5-25)

OBJECTIVE: Develop a Neurofibromatosis Type 1 (NF1) quality of life instrument to better understand and be able to measure how having NF1 affects people’s health and well-being

CONTACT: To participate or obtain more information, please contact Kavitha Nutakki (knutakki@iupui.edu) or at (317) 278-0534.

Click here for more information about this research study.
 

Coping with Pain: An Active Approach

WHO CAN PARTICIPATE: Patients age 16 to 34 with NF1 and painful plexiform tumors

OBJECTIVE: Evaluate the Acceptance and Commitment Training (ACT) intervention, which has been found effective in other medical populations for decreasing how much pain interferes with daily life 

CONTACT: To participate or obtain more information, please contact Dr. Staci Martin (martins@mail.nih.gov)  or Dr. Taryn Allen (taryn.allen@nih.gov) at (301) 496-0561.

Click here for more information about this research study.
 

NF1 Study: Everolimus for treatment of disfiguring cutaneous lesions in Neurofibromatosis 1

WHO CAN PARTICIPATE: Adult patients with NF1 and disfiguring cutaneous lesions

OBJECTIVE: Determine if orally administered Everolimus reduces the surface volume of dermal cutaneous and subcutaneous neurofibromas in subjects with NF1

CONTACT: To participate or obtain more information, please contact Patti Tate at patti.l.tate@uth.tmc.edu or (713) 500-5659.

Click here for more information about this research study.

EMAIL US

For any questions or inquiries please call 972-739-6086  or fill out the following form:

OUR MISSION: The Texas NF Foundation is committed to meeting the needs of people impacted by neurofibromatosis by providing comfort, support, education, advocacy and funding of research for a treatment, prevention or cure.

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CONTACT US

320 Decker Drive, Suite 100

Irving, TX 75062

Office: 972-739-6086 or 877-515-TXNF

Fax: 972-739-6087

EIN: 74-2138345

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© 2020 by The Texas Neurofibromatosis Foundation. All Rights Reserved.

This project was supported by

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