Quality of Friendships in Children With Neurofibromatosis

The aim of this study is to determine if children with a higher disease severity have lower quality friendships than children who are less severely affected and children who are unaffected. Researchers will test the hypothesis that the quality of friendships is inversely related to their disease severity.

Specific Aims:

1. To use the FQQ to determine if the quality of friendships in children with NF1 is lower than the quality of friendships in unaffected children. 2. To use a disease severity scale and the FQQ to determine if children who are less severely affected have higher friendship qualities than children who are more severely affected.

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Key information

Conditions

Neurofibromatosis Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Heredodegenerative Disorders, Nervous System Neoplasms Neoplasms by Histologic Type Neoplasms, Nerve Tissue Neoplastic Syndromes, Hereditary Nerve Sheath Neoplasms Nervous System Diseases Neurocutaneous Syndromes Neurodegenerative Diseases Neurofibroma Neurofibromatoses

Age range

8 year–18 year

Sex eligibility

All sexes

Study type

Observational

Primary location

U.T.M.D. Anderson Cancer Center

Houston, Texas, 77030, United States

About this study

You (your) child will be asked to complete a short questionnaire (40 questions) about their relationship with their best friend. Doctors will review your (child's) medical chart to find out how severe the disease is, so that this may be compared to the answers you have (your child has) given on the friendship questionnaire.

This is an Investigational Study. About 90-100 children and adolescents with NF-1 will be asked to take part in this study. All will be enrolled at M.D. Anderson.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Patients with a clinical diagnosis of neurofibromatosis, type 1 (NF-1) who are between the ages of 8 and 18 years will be eligible. Patients must be English or Spanish speaking (test instrument will be translated into Spanish), and be able to read.

Exclusion criteria

Treatment and study plan

Questionnaire

Behavioral

Questionnaire about the patient's relationship with their best friend.

Other names: Survey

Primary outcomes

Disease severity scale and Friendship Quality Questionnaire (FQQ)

Time frame: Questionnaire completion by patient and chart review by doctor for disease severity scoring.

Sponsors and collaborators

Lead sponsor

M.D. Anderson Cancer Center

Other

Registry information

Official study title

Quality of Friendships in Children With Neurofibromatosis: Relationship to Disease Severity

Important dates

Study start: 2004
Primary completion: 2009
Study completion: 2009
First posted: Jul 27, 2007
Registry last updated: Aug 1, 2012

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed