Establishing a Core Domain Sets for Chronic Nonbacterial Osteomyelitis and Synovitis, Acne, Pustulosis, Hyperostosis, Osteitis Syndrome
Project Period:
Grant Category:
Small Grant
Disease Area:
The CRMO/CNO workgroup aims to develop outcome measures to be used in all clinical trials with Chronic Nonbacterial Osteomyelitis (CNO) and Synovitis, Acne, Pustulosis, Hyperostosis, Osteitis (SAPHO) syndrome patients. The initial step is to develop a core domain set (CDS), which can be used for studying the success of treatments in persons with a certain disease. A domain is a specific aspect of health that should be measured or monitored. There are some outcome measures developed but they did not include the essential input from patients and families. In this project, we plan to run focus groups and online discussion boards with CNO/SAPHO patients and their parents/caregivers to get their input on important aspects of their disease. The goal of this project is to develop a list of important factors to must be considered when developing outcome measurements for patients with CNO, specifically from the perspective of patients and caregivers.
Investigators

Melissa Oliver
Indiana UniversityRelated Awarded Grants
Disease Area:
Juvenile Idiopathic Arthritis (JIA), Juvenile Dermatomyositis (JDM), Scleroderma, Juvenile Myositis, LUPUS, Rheumatoid Arthritis
Implementing a Change Package for Depression Screening and Appropriate Response for Children with Rheumatic Disease
Disease Area:
Juvenile Idiopathic Arthritis (JIA), Fibromyalgia, Pain
Initial Validation of the Pain and Symptom Assessment Tool in Juvenile Fibromyalgia Syndrome
Disease Area:
Lupus and Related Conditions (SLE/RC)