CLINICAL TRIALS
PARTICIPATE IN RESEARCH
2b Clinical Study for NF1 Patients with Cutaneous Neurofibromas
WHO CAN PARTICIPATE: Ages 18+, Diagnosed with neurofibromatosis type 1, Have 10 clinically diagnosed cNFs,
1-2 cutaneous neurofibromas on face
OBJECTIVE: The purpose of this study is to test the safety and effectiveness of 2 concentrations of NFX-179 gel compared with placebo gel in reducing the appearance of cutaneous neurofibromas (cNFs) in subjects with Neurofibromatosis Type 1 (NF1)
CONTACT: To see if you qualify for this investigational study, please fill out this form here: patients.nflectionrx.com/
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.
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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.