Validation of the NARCOMS registry: diagnosis

Area of Science:

• Neurology
• Clinical Research
• Epidemiology

Background:

• The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry collects self-reported data.
• The diagnostic accuracy of self-reported multiple sclerosis (MS) diagnoses in patient registries is often unverified.

Purpose of the Study:

• To assess the validity of multiple sclerosis (MS) diagnoses reported by participants in the NARCOMS Registry.
• To compare self-reported MS diagnoses with physician-reported diagnoses and medical record reviews.

Main Methods:

• A sample of NARCOMS participants was selected for verification.
• Diagnoses were compared against physician surveys and medical record reviews using McDonald and Poser criteria.
• Participant data was classified as typical or atypical based on predefined criteria.

Main Results:

• A high weighted response rate of 76.3% was achieved for physician surveys.
• Physician surveys confirmed MS diagnosis in 98.8% of cases.
• Medical record reviews classified 53.2% as definite MS and 16.9% as possible MS, with overall MS confirmation rate of 98.7%.

Conclusions:

• The study supports the validity of multiple sclerosis (MS) diagnoses self-reported by NARCOMS participants.
• Patient registries like NARCOMS can provide reliable data for multiple sclerosis (MS) research when combined with verification methods.