Abstract：
:The study of secondary patient data, particularly represented by claims data, has increased in recent years. The strength of this approach involves easy access to data that have been generated for administrative purposes. By contrast, collection of primary data for research is time-consuming and may therefore appear outdated. Both administrative data and data collected prospectively in clinical care can address similar research questions concerning effectiveness and safety of treatments. Therefore, why should we invest the precious time of rheumatologists to generate primary patient data? This article will outline some features of primary patient data collection illustrated by the German biologics register RABBIT (Rheumatoid arthritis: observation of biologic therapy). RABBIT is a long-term observational cohort study that was initiated more than 15 years ago. We will discuss as quality indicators: (i) study design, (ii) type of documentation, standardisation of (iii) clinical and (iv) safety data, (v) monitoring of the longitudinal follow-up, (vi) losses to follow-up as well as (vii) the possibilities to link the data base. The impact of these features on interpretation and validity of results is illustrated using recent publications. We conclude that high quality and completeness of data prospectively-collected offers many advantages over large quantities of non-standardised data collected in an unsupervised manner. We expect the enthusiasm about the use of secondary patient data to decline with more awareness of their methodological limitations while studies with primary patient data like RABBIT will maintain and broaden their impact on daily clinical practice.
journal_name
Clin Exp Rheumatoljournal_title
Clinical and experimental rheumatologyauthors
Richter A,Meißner Y,Strangfeld A,Zink Asubject
Has Abstractpub_date
2016-09-01 00:00:00pages
S79-S86issue
5 Suppl 101eissn
0392-856Xissn
1593-098Xpii
11142journal_volume
34pub_type
杂志文章,评审abstract：OBJECTIVES:Rheumatoid arthritis (RA) is a chronic, devastating disease. Treat-to-target strategy (T2T) more than the usual care, reduces disease activity by using aggressively all therapeutic options. The aim of the study was to evaluate our hypothesis that T2T strategy using biologic disease-modifying anti-rheumatic d...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2017-03-01 00:00:00
abstract：OBJECTIVES:ACA-positive/primary Sjögren's syndrome (pSS) represents a distinct overlapping entity with intermediate features in between limited systemic sclerosis (lSSc) and pSS. Few data are available on their general risk for lymphoproliferative complications, specifically regarding adverse predictors at the level of...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,多中心研究
doi：
更新日期：2018-05-01 00:00:00
abstract：OBJECTIVES:Prompted by the few studies available in the literature, we analysed patients with necrotising myopathy associated with anti-signal recognition particle (anti-SRP). METHODS:We conducted a retrospective, single-centre cohort study involving 14 patients with anti-SRP antibody followed between 2001 and 2016. ...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2017-09-01 00:00:00
abstract：OBJECTIVE:Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) constitute a subgroup of life-threatening diseases which affects the kidney in more than half of the patients at diagnosis. Currently, little has been published focusing on AAV patients with dialysis. We analysed AAV patients with chronic...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2014-05-01 00:00:00
abstract：OBJECTIVES:To describe the MRI features of gout tophi in the soft-tissues or joints of the limbs by low-field extremity-dedicated MRI. METHODS:Nine consecutive patients, 8M/1W, affected by chronic tophaceous gout were studied. Mean patients' age was 71.3±11.5 years, mean disease duration 98.1±44.9 months, and mean ser...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2011-05-01 00:00:00
abstract：OBJECTIVE:To elucidate the influence that interferon-alpha exerts on the cytokine network in active ocular Behçet's disease (BD). METHODS:Fifty patients with active ocular BD were treated with human recombinant interferon-alpha2a (rhIFN-alpha2a). Serum was analysed for the presence of IL-10, TNF-alpha, IL-8, IL-6, sIL...
journal_title：Clinical and experimental rheumatology
pub_type： 临床试验,杂志文章
doi：
更新日期：2005-07-01 00:00:00
abstract：:To assess the relationship between blood and tissue steroid levels, cortisol and dehydroepiandrosterone sulphate (DHEAS) were measured by radioimmunoassay (RIA) in blood and joint tissues from a group of patients with RA (N = 29) ranging in age from 26 to 80 years (mean 63, SD: 13) and another group with secondary ost...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1993-11-01 00:00:00
abstract：OBJECTIVES:Posterior ligaments of the sacroiliac joints (SIJ) are comprised of the long and the short posterior sacroiliac ligaments. They are recognised as a potential source of aspecific low back pain or peripartum pelvic pain. The aim of this study was to assess the characteristics of these ligaments using high reso...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2011-11-01 00:00:00
abstract：:Etanercept has demonstrated excellent safety and efficacy in the treatment of patients with psoriatic arthritis (PsA), which is a chronic inflammatory arthritis. Composed of 2 soluble TNF receptor (p75) domains fused to human immunoglobulin, etanercept neutralizes the inflammatory cytokines TNF and lymphotoxin-alpha. ...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：2002-11-01 00:00:00
abstract：OBJECTIVE:Calcium-dependent neutral cysteine proteinase (calpain) was originally referred to as an intracellular enzyme. However, recently it has come to be considered as an extracellular matrix proteinase, as well having a degrading effect on cartilage proteoglycan. In the present study we sought to determine whether ...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1999-09-01 00:00:00
abstract：OBJECTIVE:To examine effects of the COX-2 inhibitor market withdrawals on NSAID utilization among patients at increased risk of gastrointestinal (GI) and cardiovascular (CV) toxicities. METHODS:A prospective cohort study was conducted using patients enrolled in the Consortium of Rheumatology Researchers of North Ameri...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2009-05-01 00:00:00
abstract：:Besides rheumatoid factor (RF), antikeratin antibodies (AKA) and antiperinuclear factor (APN), anti-RA 33 antibody has been described as a highly specific antinuclear antibody for rheumatoid arthritis (RA). In this study RA 33 antibodies were detected using Western blotting with HeLa cell nuclear extract in a group of...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1993-09-01 00:00:00
abstract：:Cognitive functions were assessed in 12 elderly patients prior to and following a three-week therapeutic course of Naproxen, 750 mg/day. Four of the patients deteriorated in one of the four cognitive tests, one of these patients in two tests. However, none of these changes reached statistical significance. Although no...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1988-10-01 00:00:00
abstract：OBJECTIVES:To determine the preferred treatment for patients with Behçet's syndrome. METHODS:A questionnaire was given to all participants of the 2010 meeting of the International Society for Behçet's Disease. RESULTS:Forty-one respondents from 6 different subspecialties. In the case of a patient with (severe) poster...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2012-05-01 00:00:00
abstract：OBJECTIVES:To describe the effectiveness and safety of tocilizumab (TCZ), an interleukin-6 receptor inhibitor, in a cohort of patients with rheumatoid arthritis (RA) recruited in clinical practice. METHODS:TRUST was an observational study in RA patients who started treatment with TCZ in the 6 months prior to site acti...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,多中心研究
doi：
更新日期：2017-11-01 00:00:00
abstract：OBJECTIVES:Giant cell arteritis (GCA) is a cause of potentially fatal aortic aneurysms. Descriptive data on thoracic aorta measurements at the beginning of the disease are lacking. We aimed to compare aortic diameters between a recently diagnosed GCA population and an age- and sex-matched control group. METHODS:Patien...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2020-01-01 00:00:00
abstract：OBJECTIVES:Advanced glycation end products (AGEs) have been implicated in the pathogenesis of bone-destructive disorders. Yet reports on the influence of AGEs on human osteoblasts remain lacking. The aim of the study is to investigate the influence of AGE-modified bovine serum albumin (AGE-BSA) on cell growth and expre...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2011-07-01 00:00:00
abstract：:A female with seronegative polyarthritis since early adulthood developed silent chronic uveitis 15 years after the onset of her arthritis. The patient was antinuclear antibody positive and carried the HLA B27 haplotype. Arthritis was refractory to conventional anti-rheumatic medication and severe uveitis did not respo...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1998-07-01 00:00:00
abstract：OBJECTIVE:Blood cortisol and dehydroepiandrosterone sulphate (DHEAS) levels, and CD4 T cell counts were assessed in a group of 44 patients with HIV infection (17 asymptomatic and 27 symptomatic). The steroid levels were compared to those in 80 healthy subjects. RESULTS:The mean cortisol level did not differ between th...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1997-01-01 00:00:00
abstract：:In all forms of rheumatic disease in childhood, early and accurate diagnosis is essential. The aims of therapy in juvenile arthritis are pain relief and the preservation of joint function while maintaining normal growth and psychological development. As management is complex it will require a coordinated, multi-discip...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：1994-09-01 00:00:00
abstract：OBJECTIVE:To document the psychological side effects of methotrexate (MTX) treatment in children with juvenile idiopathic arthritis (JIA) and to explore the usefulness of psychological therapy to ameliorate these side effects. METHODS:The patients included in this study consisted of 29 patients with JIA using MTX. Of ...
journal_title：Clinical and experimental rheumatology
pub_type： 临床试验,杂志文章
doi：
更新日期：2007-05-01 00:00:00
abstract：:Interstitial lung disease (ILD) is one of the most serious pulmonary complications associated with connective tissue diseases (CTDs), resulting in significant morbidity and mortality. Recently, lung ultrasound examination has appeared as a useful, feasible, non-invasive, radiation-free imaging technique with high sens...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：2018-09-01 00:00:00
abstract：OBJECTIVES:To develop and test a new multidimensional questionnaire for assessment of children with auto-inflammatory disease (AID) such as FMF, PFAPA, HIDS, TRAPS in standard clinical care. METHODS:The juvenile auto-inflammatory disease multidimensional assessment report (JAIMAR) includes 16 parent or patient-centere...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2016-09-01 00:00:00
abstract：OBJECTIVES:To assess the efficacy and safety of tacrolimus in combination with corticosteroids in patients with immune-mediated necrotising myopathy. METHODS:The medical records of 20 hospitalised patients with immune-mediated necrotising myopathy (IMNM) who had received tacrolimus combined with oral prednisone from J...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2019-09-01 00:00:00
abstract：OBJECTIVES:Rheumatoid arthritis (RA) is a complex pathology to identify at an early stage. A large number of patients with recent onset polyarthritis (ROP) do not usually fulfil the ACR criteria for diagnosis of the disease and are classified as having undifferentiated polyarthritis. The aim of this study is to verify ...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,多中心研究
doi：
更新日期：2008-05-01 00:00:00
abstract：:Apart from their pivotal role in dietary lipid absorption and cholesterol homeostasis, bile acids (BAs) are increasingly recognised as important signalling molecules in the regulation of systemic endocrine functions. As such BAs are natural ligands for several nuclear hormone receptors and G-protein-coupled receptors....
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章,评审
doi：
更新日期：2016-07-01 00:00:00
abstract：:Prostaglandin (PG)E2, cyclic adenosine monophosphate (cAMP), white blood cells (WBC), total protein (TP), total complement activity (CH50) and beta-2-microglobulin (beta-2-m) were measured at baseline and after eight days in the synovial fluid (SF) of 16 patients affected with knee-joint effusion due to various arthro...
journal_title：Clinical and experimental rheumatology
pub_type： 临床试验,杂志文章,随机对照试验
doi：
更新日期：1989-05-01 00:00:00
abstract：OBJECTIVES:To compare and analyse the recommendations from clinical practice guidelines (CPGs) on gout worldwide, examine the consistency across CPGs, and provide suggestions to develop and update gout guidelines. METHODS:We conducted systematic searches in MEDLINE, CBM, GIN, NICE, NGC, WHO, SIGN, DynaMed, UpToDate, a...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2020-09-01 00:00:00
abstract：OBJECTIVES:Rheumatoid arthritis (RA) is associated with accelerated atherosclerosis and premature cardiovascular death. Anti-TNF therapy is thought to reduce clinical cardiovascular disease risk and improve vascular function in RA patients. However, the specific effects of TNF inhibitors on endothelial cell function ar...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：2013-03-01 00:00:00
abstract：:As no critical evaluation of native-DNA antibodies due to d-penicillamine (dP) has been made, we have examined this using highly purified DNA fractions obtained by benzoylated-naphthoylated-DEAE-cellulose chromatography. The nDNA, dsDNA, and ds/ss DNA binding was determined in 10 normals, 24 rheumatoid arthritis (RA) ...
journal_title：Clinical and experimental rheumatology
pub_type： 杂志文章
doi：
更新日期：1985-07-01 00:00:00
