The ESPALDA Registry (Registry of Axial Spondyloarthritis of America)
Introduction
Spondyloarthritis (SpA) is a heterogeneous group of rheumatic diseases that have been classified together because they share a large number of clinical, radiological, epidemiological and genetic characteristics, which clearly distinguishes them from other inflammatory diseases of the musculoskeletal system. Currently SpA is divided according to the prevalence into two large groups, the axial SpA (axSpA) and the peripheral.
In our region and worldwide, there have been highly positive experiences, with the creation of registries for these pathologies 1,2. The last registry that was carried out in America was RESPONDIA 3,4, which for more than 10 years helped us to know the characteristics of our patients with these pathologies. Today the classification criteria have been updated, our population has changed and our knowledge about the pathology has also changed. We believe it is important to have a new registry of patients with axial spondyloarthritis.
Objective
To develop an American registry of patients with axSpA, the ESPALDA Registry (Registry of Axial Spondyloarthritis of America), centralized through a computerized system shared via the Internet, in which we can see the characteristics of our patients in the region and compare them with registries from other regions, seeing the uniqueness of our patients.
Materials and methods
This cohort must include consecutive adult patients (age ≥ 18 years), diagnosed with axSpA according to the ASAS classification criteria, who visit any of the different participating centers. The diagnosis of axSpA has to be made by a rheumatologist. All patients must give their consent to participate in the study. Annual visits will be conducted. Aspects like time of progression of the symptoms and diagnosis; sex, age and ethnic group; education; smoking (+/-pack / year) and alcohol consumption; family history of axSpA; manifestations of axSpA; previous and current treatments, will all be recorded. Duration of morning stiffness in minutes; Visual Analog Scale (VAS) of pain; night pain and morning stiffness (0-100 mm). Maneuvers will be performed to detect sacroiliitis (at least one and will be registered as positive / negative, left side / right side). The sternoclavicular, manubriosternal, sternocostal joints will be palpated, and BASMI. Erythrocyte sedimentation (ESR) will be requested in mm / h and C-reactive protein (CRP) in mg / dl, HLA B27; panoramic x-rays (Rx) of the pelvis, fergusson, lumbar spine profile and cervical profile, and if necessary, MRI of the sacroiliac joint. Sacroiliitis grades will be scored according to the New York criteria. The patient will complete the questionnaires: BASFI, BASDAI, ASQol, WPAI, ASAS HI. Disease activity will be assessed using ASDAS and BASDAI. Physical activity will be evaluated through the IPAQ questionnaire.
The data will be centralized through the website www.espaldapanlar.com.ar. Each center will be in charge of uploading the patients' data.
Authorship
All centers will be invited and will be eligible to participate.
Only centers with 25 or more uploaded patients may appear among the authors and may request statistical data for further analysis and publication.
Contact
The PANLAR Spondyloarthritis Study Group invites you to participate in the ESPALDA project, a cohort of Axial Spondyloarthritis patients from America.
We look forward to your participation in order to obtain data from patients with Spondyloarthritis in our region.
The protocol and the file can be downloaded by clicking here.
If you have any questions, please contact Wilson Bautista (wilson.bautista@gmail.com) and Fernando Sommerfleck (fersommerfleck@gmail.com).
Bibliography
1. Collantes E, Zarco P, Muñoz-Gomariz E, Juanola X, Mulero J, Fernandez-Sueiro J, et al. Disease pattern of Spondyloarthropathies in Spain: description of the first National Registry (REGISPONSER). Rheumatology (Oxford) - Extended Report. 2007; 46 (8): 1309-15. https://doi.org/10.1093/rheumatology/kem084
2. Zarco P, González CM, Rodriguez DLA, Peiro E, Mateo I, et al. Extra-articular manifestations in patients with Spondyloarthritis: Baseline characteristics of the cohort of patients with spondyloarthritis in the AQUILES study. Reumatol Clin. 2015; 11 (2): 83–89 https://doi.org/10.1016/j.reuma.2014.04.003
3. Daniel R. Palleiro and Emilia Spangenberg. Ibero-american Registry of Spondyloarthritis (RESPONDIA): Uruguay. Reumatol Clin. 2008; 4 Suppl 4: S73-8.
4. Landi M, Maldonado-Ficco H, Perez-Alamino R, Maldonado-Cocco JA, Citera G, et al. Gender differences among patients with primary ankylosing spondylitis and spondylitis associated with psoriasis and inflammatory bowel disease in an iberoamerican spondyloarthritis cohort. Medicine (Baltimore). 2016 ;95(51). DOI 10.1097/MD.000000000000565
