Registry for Spondyloarthritis in the Netherlands
In 2014, dr. Astrid van Tubergen and prof. dr. Annelies Boonen (both Maastricht University Medical Center) had the intention to develop a registry for spondyloarthritis. At the same time prof. dr. Timothy Radstake (University Medical Center Utrecht) intended to develop a registry for psoriatic arthritis. Because of overlap in these diseases, a joint registry was created, SpA-Net. In SpA-Net, both patients with spondyloarthritis and psoriatic arthritis are being followed over time.
Spondyloarthritis (SpA) is a chronic inflammatory rheumatic disease. The term refers to a separate disease entity, but is also an umbrella 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 will improve mastery over the disease in patients, provide transparency on the quality of care delivered to SpA patients and improve this by providing mirror information to participating centers. Moreover, SpA-Net monitors drug efficacy and safety, and gathers data (including biological samples) for (translational) scientific studies.
Planning and implementation
SpA-Net started including patients in March 2016. At this point, already more than 1000 patients have been included by the participating centers.
The DREAM team of SpA-Net consists of:
- Maastricht University Medical Center: dr. Astrid van Tubergen
- University Medical Center Utrecht: prof. dr. Timothy Radstake
- Medisch Spectrum Twente (Enschede): dr. Harald Vonkeman