MYONET now includes longitudinal patient data contributed by >20 centres in >16 countries. The registry is accessed using a web-based interface, enabling access from any computer with internet access. All data are encrypted and stored on secure and automatically backed-up servers.
The registry includes standardised data collection proforma and incorporates the International Myositis Assessment & Clinical Studies Group (IMACS) disease activity and disease damage core set measures.
(link to IMACS disease activity website)
Using the registry
Local ethical approvals are required at each centre where the registry is implemented. Informed consent is obtained from all included patients. The exact structures used to collect data vary from country to country and centre to centre. For example, in the UK, the project is coordinated from the University of Manchester, but >60 individual centres contribute data.
By default, each centre only has access to their individual dataset. Most data are input manually, usually during (or soon after) clinic appointments, but there are facilities for bulk uploads of data to the registry and the potential to synchronise with other systems, including electronic health records and smartphone apps.
Within the registry, each patient record is arranged into two main sections. Firstly, a ‘core’ dataset includes demographics, diagnosis, clinical features, laboratory investigations, past medications, auto-antibodies, muscle biopsy and classification criteria details.
Secondly, ‘per visit’ data can then be added for each patient. This includes IMACs core set measures (physician’s global assessment, MMT, disease activity, muscle enzymes, patient’s global assessment & HAQ), lab and imaging results, prescriptions, myositis damage index, functionality index, dermatology life quality index, quality of life and SF36 questionnaires, which can be updated longitudinally.
Information added to this section populates a patient ‘scoreboard’ that summarises clinical outcome measures over time and can be used in the clinical setting to obtain a snapshot of disease activity and help facilitate discussions with patients and treatment decisions.
The MYONET registry and underlying data storage platform is also integral to the UK Medical Research Council funded ‘Prospective Cohort Study in Myositis’ (MYOPROSP - https://clinicaltrials.gov/ct2/show/NCT02468895) and the Swedish quality of care register (SRO). Both studies are collecting standardised longitudinal data regarding national inception cohorts of patients with IIM.
The MYONET registry is currently undergoing modification to support the introduction of Fast Health Interoperability Resources (FHIR). FHIR is an emerging IT standard which facilitates exchange of health data by using agreed methods of describing data in different systems. This permits easier interoperability of IT systems and will support more widespread integration of the MYONET registry with local electronic health records, without the need for bespoke synchronisation solutions.
In the future there will also be an increasing emphasis on collection of longitudinal patient reported outcome measures. These data can be input directly into the registry by the patient using a smartphone ‘App’ or other device (including ‘wearable tech’).
Clinical manifestations of extra muscular disease in dermatomyositis and anti- synthetase syndrome. Results from the EuroMyositis registry
Survival prediction in myositis associated interstitial lung disease using the interstitial lung disease – GAP model
Cardiovascular consequences of systemic inflammation in IIM
Biomarkers as predictors to treatment response and outcome
The Euromyositis Registry: Myositis Serology
The Euromyositis Registry: A Multinational Collaborative Approach to Rare Disease Research
Prediction of disease progression in patients with polymyositis and dermatomyositis using the Euromyositis registry
Long term outcomes in childhood myositis
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