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


N/A
8 Years
18 Years
Not Enrolling
Both
Neurofibromatosis

Thank you

Trial Information

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


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.


Inclusion Criteria:



1) 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:

Type of Study:

Observational

Study Design:

Observational Model: Case-Only, Time Perspective: Prospective

Outcome Measure:

Disease severity scale and Friendship Quality Questionnaire (FQQ)

Outcome Time Frame:

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

Safety Issue:

No

Principal Investigator

Bartlett D. Moore, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

M.D. Anderson Cancer Center

Authority:

United States: Institutional Review Board

Study ID:

2004-0791

NCT ID:

NCT00508235

Start Date:

December 2004

Completion Date:

July 2009

Related Keywords:

  • Neurofibromatosis
  • Neurofibromatosis
  • Quality of Friendships
  • Disease Severity
  • Questionnaire
  • NF-1
  • Neurofibromatoses
  • Neurofibromatosis 1
  • Osteitis Fibrosa Cystica

Name

Location
U.T.M.D. Anderson Cancer Center Houston, Texas  77030