EULAR recommendations for a core data set for pregnancy registries in rheumatology.

BACKGROUND AND OBJECTIVE: There is an urgent need for robust data on the trajectories and outcomes of pregnancies in women with inflammatory rheumatic diseases (IRD). In particular when rare outcomes or rare diseases are to be investigated, collaborative approaches are required. However, joint data analyses are often limited by the heterogeneity of the different data sources.To facilitate future research collaboration, a European League Against Rheumatism (EULAR) Task Force defined a core data set with a minimum of items to be collected by pregnancy registries in rheumatology covering the period of pregnancy and the 28-day neonatal phase in women with any underlying IRD. METHODS: A stepwise process included a two-round Delphi survey and a face-to-face meeting to achieve consensus about relevant items. RESULTS: A total of 64 multidisciplinary stakeholders from 14 different countries participated in the two rounds of the Delphi process. During the following face-to-face meeting of the EULAR Task Force, consensus was reached on 51 main items covering 'maternal information', 'pregnancy' and 'treatment'. Generic instruments for assessment are recommended for every item. Furthermore, for the five most frequent IRDs rheumatoid arthritis, spondyloarthritis, juvenile idiopathic arthritis, systemic lupus erythematosus and other connective tissue diseases, disease-specific laboratory markers and disease activity measurements are proposed. CONCLUSION: This is the first consensus-based core data set for prospective pregnancy registries in rheumatology. Its purpose is to stimulate and facilitate multinational collaborations that aim to increase the knowledge about pregnancy course and safety of treatment in women with IRDs during pregnancy.

European Network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collection.

BACKGROUND: The collaborative initiative of the European Network of Pregnancy Registers in Rheumatology (EuNeP) aims to combine data available in nationwide pregnancy registers to increase knowledge on pregnancy outcomes in women with inflammatory rheumatic diseases (IRD) and on drug safety during pregnancy and lactation. The objective of this study was to describe the similarities and differences of the member registers. METHODS: From all registers, information about their structure and design was collected, as well as which parameters regarding demographics, maternal outcomes, treatment, course and outcome of pregnancy, and development of the child were available in the respective datasets. Furthermore, the current recruitment status was reported. RESULTS: The four registers (EGR2 (France), RePreg (Switzerland), RevNatus (Norway), and Rhekiss (Germany)) collect information prospectively and nationwide. Patients can be enrolled before conception or during pregnancy. To date, more than 3500 patients in total have been included, and data on 2200 pregnancies with an outcome are available. The distribution of diagnoses in the respective registers varies considerably, and only three entities (rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis) are captured by all the registers. Broad consistency was found in non-disease-specific data items, but differences regarding instruments and categories as well as frequency of data collection were revealed. Disease-specific data items are less homogeneously collected. CONCLUSION: Although the registers in this collaboration have similar designs, we found numerous differences in the variables collected. This survey of the status quo of current pregnancy registers is the first step towards identifying data collected uniformly across registers in order to facilitate joint analyses. TRIAL REGISTRATION: Not applicable.

Influences of spoken word planning on speech recognition.

In 4 chronometric experiments, influences of spoken word planning on speech recognition were examined. Participants were shown pictures while hearing a tone or a spoken word presented shortly after picture onset. When a spoken word was presented, participants indicated whether it contained a prespecified phoneme. When the tone was presented, they indicated whether the picture name contained the phoneme (Experiment 1) or they named the picture (Experiment 2). Phoneme monitoring latencies for the spoken words were shorter when the picture name contained the prespecified phoneme compared with when it did not. Priming of phoneme monitoring was also obtained when the phoneme was part of spoken nonwords (Experiment 3). However, no priming of phoneme monitoring was obtained when the pictures required no response in the experiment, regardless of monitoring latency (Experiment 4). These results provide evidence that an internal phonological pathway runs from spoken word planning to speech recognition and that active phonological encoding is a precondition for engaging the pathway.

Perceptual uniqueness point effects in monitoring internal speech.

Disagreement exists about how speakers monitor their internal speech. Production-based accounts assume that self-monitoring mechanisms exist within the production system, whereas comprehension-based accounts assume that monitoring is achieved through the speech comprehension system. Comprehension-based accounts predict perception-specific effects, like the perceptual uniqueness-point effect, in the monitoring of internal speech. We ran an extensive experiment testing this prediction using internal phoneme monitoring and picture naming tasks. Our results show an effect of the perceptual uniqueness point of a word in internal phoneme monitoring in the absence of such an effect in picture naming. These results support comprehension-based accounts of the monitoring of internal speech.