Health Correlates of Bullying in Pediatric Neurofibromatosis

Study ID
STU 092012-054

Cancer Related
No

Healthy Volunteers
No

Study Sites

Contact
Natasha Anderson
214-456-6439
natasha.anderson@childrens.com

Principal Investigator
Alice Holland

Summary

This study will involve the administration of self-report questionnaires regarding bullying experiences and attitudes. These questionnaires will be administered to patients aged 8-18 diagnosed with neurofibromatosis and their consenting parent/guardian during a routine follow-up visit to the neurofibromatosis Clinic at Children's Medical Center Dallas (CMCD). outcome variables will include questionnaire responses, which will be anonymized prior to data entry and statistical analysis. Study endpoint will be the accrual of 60 participants. a maximum of 120 charts will be reviewed to compile the sample population necessary to address the research question. a maximum of 80 participants will be consented on this protocol, including projected screen failures and early withdrawals. Conditions which would result in a participant exiting the study prior to the expected completion date would include non-compliance, participant withdrawal of consent, or severe emotional distress. This project at CMCD is a branch of a multi-site study; however, this branch is the only site specifically evaluating neurofibromatosis. De-identified data will be shared with the parent site at the university of nebraska at Lincoln. The total sample size for the entire project across all sites will be 160. Study recruitment will last approximately 1 year, with data analysis lasting approximately 6 months beyond the conclusion of recruitment.

Participant Eligibility

6.1.1 Diagnosis of neurofibromatosis.

6.1.2 Current age 8.0 to 18.11 years.

6.1.3 Enrollment in third grade or above (due to normative sample of questionnaires).

6.1.4 Proficiency in English (because questionnaires have not been validated on non-English-speaking populations).

6.1.5 Completion of the signed informed consent by a parent or legal guardian.

6.1.6 Patient[Single Quote]s assent to participate in the protocol.