CLINICAL TRIALS

PARTICIPATE IN RESEARCH

Renue Trial

WHO CAN PARTICIPATE: Phase 2b study in children (2 years or older) and adults with an inoperable NF1-PN

OBJECTIVE: SpringWorks Therapeutics is currently conducting a clinical trial to study an investigational MEK inhibitor called mirdametinib in patients with Neurofibromatosis Type 1-associated plexiform neurofibromas (NF1-PN)

CONTACT: More information on the ReNeu study can be found on the SpringWorks website or on www.clinicaltrials.gov under the identifier NCT03962543.

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.