Resiliency Training for Neurofibromatosis
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial tests two programs designed to help teens with Neurofibromatosis 1 or 2 (NF1 or NF2) manage stress and symptoms more effectively. Researchers aim to determine which program works best through online group sessions over eight weeks. Teens diagnosed with NF1 or NF2, who speak English, and struggle with stress or symptoms, are ideal candidates for this study. As an unphased trial, it provides a unique opportunity for teens to access potentially helpful programs and contribute to valuable research.
Do I need to stop my current medications to join the trial?
The trial does not specify if you need to stop your current medications, but if you have recently changed your antidepressant medication in the past 3 months, you may not be eligible to participate.
What prior data suggests that these stress and symptom management programs are safe for adolescents with Neurofibromatosis?
Research has shown that stress and symptom management programs designed for individuals with neurofibromatosis can be beneficial. Studies have found that these programs improve both physical and mental well-being. Participants often report fewer issues with pain and stress.
Regarding safety, these programs are generally well-tolerated. No reports of negative effects exist because they focus on mind-body skills, such as relaxation and stress management. This training is non-invasive and safe. Therefore, those considering joining such a trial can feel assured that it aims to provide a safe and supportive experience.12345Why are researchers excited about this trial?
Researchers are excited about the Resiliency Training for Neurofibromatosis because it focuses on stress and symptom management, which is a fresh approach compared to traditional treatments like surgery, chemotherapy, or radiation. Unlike these methods, which directly target the physical manifestations of neurofibromatosis, the stress and symptom management programs aim to improve patients' quality of life by addressing the psychological and emotional challenges they face. This approach is designed to empower patients with coping strategies to manage their condition's impact on daily life, offering a holistic and supportive complement to existing medical treatments.
What evidence suggests that this trial's treatments could be effective for managing stress and symptoms in adolescents with Neurofibromatosis?
Research has shown that mind-body skills training programs can significantly enhance both the physical and mental quality of life for individuals with neurofibromatosis, a genetic condition that causes tumors to grow on nerve tissue. Studies have found that participants in these programs experienced long-term benefits, such as reduced stress and improved emotional health. One study noted that many teenagers completed the training and follow-up sessions and expressed satisfaction with the program. These treatments aim to build resilience, helping patients manage symptoms and stress more effectively. In this trial, participants will join one of two programs: Stress and Symptom Management Program 1 or Stress and Symptom Management Program 2. Both programs are designed to provide these benefits, potentially making everyday life easier for those with neurofibromatosis.12678
Who Is on the Research Team?
Ana-Maria Vranceanu, PhD
Principal Investigator
Massachusetts General Hospital
Are You a Good Fit for This Trial?
Adolescents aged 12-17 with Neurofibromatosis type 1 or 2, who can understand and consent to the study in English with parental approval. Participants should have difficulties managing stress and NF symptoms but no major unrelated medical issues, recent changes in antidepressants, or recent cognitive therapy.Inclusion Criteria
Exclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Treatment
Participants undergo an 8-week stress and symptom management program via secure live video conferencing
Follow-up
Participants are monitored for changes in quality of life, depression, pain, and anxiety
What Are the Treatments Tested in This Trial?
Interventions
- Stress and Symptom Management Program 1
- Stress and Symptom Management Program 2
Trial Overview
The trial is testing two different resiliency training programs delivered through live video over eight weeks to see how they help adolescents with Neurofibromatosis manage stress and symptoms related to their condition.
How Is the Trial Designed?
2
Treatment groups
Experimental Treatment
Find a Clinic Near You
Who Is Running the Clinical Trial?
Massachusetts General Hospital
Lead Sponsor
United States Department of Defense
Collaborator
Citations
Effect of Mind-Body Skills Training on Quality of Life for ...
A mind-body skills training program tailored to patients with neurofibromatosis can have long-term benefits on physical and psychological quality of life.
Resiliency Training in Adolescents With NF1 and NF2
The aims of this study are to compare the effect of two stress and symptom management programs tailored for adolescents with neurofibromatosis on quality of ...
A pilot randomized controlled trial
Forty-five adolescents (88%) completed posttreatment, and 37 (82%) completed 6-month follow-up. Satisfaction was high in both conditions. The RY-NF showed ...
Mind-Body Treatment for International English-Speaking ...
Objective: The objective of this study is to evaluate the efficacy of the Relaxation Response Resiliency Program for NF versus the Health ...
Psychological resiliency explains the relationship between ...
Patients with NF experience emotional distress, including depression, anxiety, and perceived stress, at rates higher than the general population [6] and ...
Mind-Body Treatment for International English-Speaking ...
The 3RP-NF is a comprehensive, multimodal treatment program designed to improve the ability to cope with NF symptoms and stress. The program ...
Improvements in pain interference among geographically ...
Improvements in pain interference among geographically diverse adults with neurofibromatosis: Results from a fully powered randomized controlled trial - PMC.
Cognition and behavior in neurofibromatosis type 1
Studies consistently show that NF1 is associated with a 0.6–0.8 standard deviation reduction in IQ, with verbal and nonverbal intellectual ...
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