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The Duke myasthenia gravis clinic registry: I. Description and demographics
Donald B Sanders1, Shruti M Raja1, Jeffrey T Guptill1
1Neuromuscular Division, Department of Neurology, Duke University Medical Center, Durham, North Carolina, USA.
Insights
The Duke Myasthenia Gravis (MG) Registry shows increasing male proportion and later onset age for MG patients since 1980. This highlights the importance of longitudinal data for understanding disease trends.
Area of Science:
- Neurology
- Clinical Research
- Epidemiology
Background:
- The Duke Myasthenia Gravis (MG) Clinic Registry has collected physician-derived data since 1980.
- Understanding demographic and clinical trends in MG is crucial for patient care and research.
Purpose of the Study:
- To analyze longitudinal data from the Duke MG Clinic Registry.
- To identify changes in Myasthenia Gravis patient characteristics and disease patterns over time.
Main Methods:
- Retrospective review of data from 1060 MG patients seen between 1980 and 2008.
- Analysis of patient demographics, age of onset, presence of thymoma, antibody status, and disease classification.
Main Results:
- The proportion of males with MG has increased, with later onset symptoms in both sexes compared to earlier studies.
- Thymoma was present in 8.5% of patients; ocular MG (OMG) and generalized MG showed distinct antibody and clinical features.
- While overall disease class distribution was similar, women had more myasthenic crises and men more OMG.
Conclusions:
- The Duke MG Registry provides valuable data for comprehensive, longitudinal analysis of MG.
- MG patient demographics, particularly age of onset and sex distribution, have shifted over the past decades.
- Registry data facilitates comparisons between historical and contemporary populations, aiding in understanding disease evolution and treatment responses.
Introduction:
The Duke Myasthenia Gravis (MG) Clinic Registry is a disease-specific database containing physician-derived data from patients seen in the Duke MG Clinic since 1980.
Methods:
Data from 1060 MG patients initially seen between 1980 and 2008 were reviewed.
Results:
Fifty-four percent were male. Symptoms began after age 50 in 66% of males and 42% of females. Peak onset age in males was in their 60's; females had no predominant onset age. Onset age for both sexes increased from 1980 to 2008. Thymoma was present in 8.5%. Weakness was limited to ocular muscles for at least 2 y in 22% and became generalized later in 8.3% of these. Acetylcholine receptor antibodies were present in 78% overall, 82% with generalized MG and 52% with ocular MG (OMG). The distribution of MG disease class was similar in males and females, except that a greater proportion of women experienced myasthenic crisis and men were more likely to have OMG.
Discussion:
Data in the Registry permit comprehensive and longitudinal analysis of a validated MG population. Analysis of Registry data shows that the frequency of AChR antibody negative MG, ocular MG, and thymoma are similar to other reports, but the onset age and proportion of males have progressively increased compared to studies published more than 20 y ago. These observations demonstrate the value of collecting comprehensive clinical information and comparing historic and contemporary populations. Other potential uses of Registry data include comparison of outcome measures in different disease subgroups and the response to specific treatments.
