Resiliency Training in Adolescents With NF1 and NF2



Status:Not yet recruiting
Conditions:Other Indications
Therapuetic Areas:Other
Healthy:No
Age Range:12 - 17
Updated:3/21/2019
Start Date:May 1, 2019
End Date:April 1, 2023
Contact:Ana-Maria Vranceanu, PhD
Email:avranceanu@mgh.harvard.edu
Phone:6176437996

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Resiliency Training in Adolescents With NF1 and NF2; A Randomized Controlled Trial Via Secure Live Video Conferencing to Improve Emotional, Social and Physical Function

This randomized controlled trial for resiliency training in adolescents with
Neurofibromatosis 1 and Neurofibromatosis 2 via secure live video to determine the efficacy
two stress and symptom management programs. Both programs are 8 week group programs.

Neurofibromatosis (NFs) are rare genetic conditions with cure. Adolescents with NF experience
more symptoms of depression and anxiety, higher levels of stress associated with coping with
NF symptoms, lower levels of self esteem, difficulties with social skills and social support,
high rates of learning disabilities, and more pain as compared with the general population
norms.

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 life and psychosocial
functioning. We will also examine the degree to which treatment-dependent improvements in
quality of life are mediated by improvements in depression, pain intensity and pain
interference.

Inclusion Criteria:

- Has a diagnosis of NF1 or NF2 and is between the ages of 12-17

- Is capable of completing and fully understanding the informed consent process/assent
and the study procedures and assessments in English; has parental approval for
participation

- English speaking and at least a 3rd grade self-reported and parent reported reading
level

- Self reported/parent reported difficulties coping with stress and NF symptoms

Exclusion Criteria:

- Has major medical co-morbidity not NF related expected to worsen in the next 12 months

- Recent (within past 3 months) change in antidepressant medication

- Recent participation in cognitive behavioral therapy or relaxation therapy (within
past 3 months)

- Has significant mental health diagnosis requiring immediate treatment (e.g., untreated
bipolar disorder, psychotic disorder, active substance dependence)

- Unable or unwilling to complete assessments electronically via REDCap

- Unable or unwilling to participate in group videoconferencing sessions

- Unable or unwilling to participate along with at least 1 parent in a video screening
session
We found this trial at
1
site
185 Cambridge Street
Boston, Massachusetts 02114
617-724-5200
?
mi
from
Boston, MA
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