Registry for Spondyloarthritis in the Netherlands
SpA-Net is a quality management system and registry that enables both the treatment provider and the patient to closely monitor the disease activity and quality of life, improvement of communication and empowerment of patients with spondyloarthritis.
Spondyloarthritis (SpA) is a chronic inflammatory rheumatic disease. SpA is an umbrella term for a group of interrelated disorders, comprising ankylosing spondylitis, psoriatic arthritis, reactive arthritis, SpA associated with inflammatory bowel disease, and undifferentiated SpA. The clinical presentation of SpA is heterogeneous and can include arthritis, inflammatory back pain, dactylitis, and enthesitis. Extra-articular manifestations such as uveitis, psoriasis, and inflammatory bowel disease commonly occur.
Patients with SpA can be classified as having ‘axial SpA’, reflecting inflammation of the sacroiliac joints and spine, or ‘peripheral SpA’, consisting of arthritis, enthesitis and dactylitis. Both axial and peripheral SpA share clinical features, run in families and are associated with the genetic marker HLA‑B27. An important reason for a distinction, is the difference in treatment for axial and peripheral disease.
Monitoring and treatment
SpA is a potentially disabling disease, which needs long term monitoring and treatment. Despite its high prevalence and substantial socioeconomic impact, information on the quality of care delivered to these patients in daily practice in the Netherlands is scarce. Many SpA patients are treated with expensive drugs (i.e. biologicals), but it is unknown whether the benefits they provide, justify the costs. Univocal treatment strategies for SpA have not yet been defined. Biosimilars have recently been registered, also for SpA, and it is expected that new biologicals with different modes of action will be registered in the near future. Real-world data of such developments and treatment guidelines for (subgroups of) SpA patients are urgently needed.
A disease-specific registry for SpA in the Netherlands (SpA-Net) has been developed in order to obtain transparency on treatment and outcome of unselected SpA patients in daily rheumatology practice. Through a web-based patient medical file and at the same time a quality management system, patient outcome and pharmacovigilance data will be prospectively gathered. Data are readily available to care providers and an excerpt of the data is also made available for patients. SpA-Net improves the involvement and mastery of patients and can provide transparency on the quality of care delivered to SpA patients and improve this by the availability of benchmark information. Moreover, SpA-Net closely monitors drug efficacy and safety and gathers data for scientific studies.
Planning and implementation
SpA-Net started including patients in March 2016. In 2019, 1200 patients were included in the registry by the 5 participating centers.
The DREAM team of SpA-Net consists of:
- Maastricht Universitair Medisch Centrum: dr. Astrid van Tubergen and professor Annelies Boonen
- Medisch Spectrum Twente (Enschede): dr. Harald Vonkeman