Generalizable EHR-R-REDCap pipeline for a national multi-institutional rare tumor patient registry

Objective To develop a clinical informatics pipeline designed to capture large-scale structured Electronic Health Record (EHR) data for a national patient registry. Materials and Methods The EHR-R-REDCap pipeline is implemented using R statistical software to remap and import structured EHR data into the Research Electronic Data Capture (REDCap)-based multi-institutional Merkel Cell Carcinoma (MCC) Patient Registry using an adaptable data dictionary. Results Clinical laboratory data were extracted from EPIC Clarity across several participating institutions. Laboratory values (Labs) were transformed, remapped, and imported into the MCC registry using the EHR labs abstraction (eLAB) pipeline. Forty-nine clinical tests encompassing 482 450 results were imported into the registry for 1109 enrolled MCC patients. Data-quality assessment revealed highly accurate, valid labs. Univariate modeling was performed for labs at baseline on overall survival (N = 176) using this clinical informatics pipeline. Conclusion We demonstrate feasibility of the facile eLAB workflow. EHR data are successfully transformed and bulk-loaded/imported into a REDCap-based national registry to execute real-world data analysis and interoperability.

Results From the WAGR Syndrome Patient Registry: Characterization of WAGR Spectrum and Recommendations for Care Management

WAGR syndrome is a rare genetic disorder characterized by Wilms tumor, Aniridia, Genitourinary anomalies, and Range of developmental delays. In addition to the classic features, patients affected by WAGR syndrome can develop obesity and kidney failure, and a wide variety of non-classical manifestations have also been described. This suggests that a broader phenotypic spectrum beyond the classic syndrome exists and here we demonstrate that spectrum using data from the WAGR Syndrome Patient Registry. In the present study, we collected information from 91 individuals enrolled in the registry to explore self-reported health issues in this patient population. A wide variety of common clinical issues not classically associated with the disorder were found, prompting the redefinition from WAGR syndrome to WAGR spectrum disorder to incorporate the phenotypic variations that occur. A comprehensive care management approach is needed to address the wide range of clinical issues and we propose a care model for patients affected by WAGR spectrum disorder. Further research is needed to solidify the breath of the phenotype and confirm the observations in this study to advance individualized patient care in this population.

A Register-Based Study: Cough - A Frequent Phenomenon in the Adult Population

BackgroundChronic cough, more than 8 weeks, can either be without co-morbidity called unexplained chronic cough (UCC) or with co-morbidity called refractory chronic cough (RCC). Using datasets from the Danish National Prescription Registry (Prescription Registry) and Danish National Patient Registry (Patient Registry) we wanted to investigate the prevalence of cough in a Nationwide registry from both primary and secondary care setting.Material and MethodsInclusion criteria were patients 18-90 years with at least one final cough diagnosis (ICD-10 DR05/DR059) in Patient registry or patients who have redeemed ≥2 prescriptions for relevant cough-medication within a 90-day harvest in the Prescription registry from 2008-2017. To validate this study’s chosen proxy on chronic cough an analysis of the Patient registry sub-population with a contact of ≥8 weeks and then final diagnosis code DR05/DR059 was also performed. The population was divided into UCC and RCC.ResultsOf the 104.216 patients from the Prescription registry, 52.727 were classified as having UCC and 51.489 were classified with RCC. From the Patient registry 34.260 were included, of whom 12.278 had UCC and 21.982 had RCC. Cough were frequently found among females between 50 and 66 years. Spirometry was performed in 69% and 57%, X-ray in 73% and 58% and asthma challenge test performed in 13% and 5% (UCC and RCC, respectively). The frequency of co-morbidities such as heart failure, rheumatologic disease, pulmonary embolism, and diabetes was < 10%. The distribution of all the included variables of patients who have had attachment to the department for 8 weeks or more, was similar as in the main group, thus fewer.ConclusionMany patients suffer from chronic cough or cough requiring medications, with or without co-morbidity; frequently found among menopausal women. Most patients had a substantial work-up performed. The high frequency and the resources consuming work-up program call for systematic coding of disease, systematic patient evaluation and more specific treatment options.The study was accepted by the Danish Data Protection Agency (ID: no. P-2019-191)

Korean Medicine Patient Registry of Postoperative Therapy for Musculoskeletal Disorders (KPOP-MD): A study protocol (Preprint)

BACKGROUND The frequency of patients undergoing musculoskeletal surgery has been increasing with the increase in average life expectancy of the population. An aging population with sustained musculoskeletal pain and disability is the main complaint of Korean medical institutions. Recently, Korean medicine clinicians have addressed the collection and analysis of the medical utilization pattern of patients with musculoskeletal discomfort after surgery, to identify the current demographics of patients and to provide empirical evidence for Korean medicine postoperative rehabilitation strategies as well as political decisions on the healthcare coverage of Korean medicine. OBJECTIVE Overall, the aims of Korean Medicine Patient Registry of Postoperative Therapy for Musculoskeletal Disorders (KPOP-MD) are to (1) explore the general characteristics of postoperative patients with musculoskeletal discomfort and (2) evaluate the overall improvement after performing various Korean medicine treatment regimens for musculoskeletal disorders, based on a process involving the collection of nationwide registry outcomes. METHODS KPOP-MD will collaborate with 17 traditional Korean medical institutions and register postoperative patients with musculoskeletal discomfort. A total of 150 patients who meet the eligibility criteria will be registered in the study. After registration, we will collect personal health information from each patient, such as general socio-demographics, surgical site discomfort, anthropometrics, and health-related quality of life (HRQoL) at each assessment. The primary endpoint will be a change in the numeric rating scale for pain at the surgical location. The additional evaluation variables will be a change in the site-specific patient-reported questionnaires, recovery status questionnaires, other discomfort assessments, and cost data. RESULTS not applicable CONCLUSIONS This is the first prospective, multicenter, patient-based registry of postoperative patients with musculoskeletal disorders in various traditional Korean medical institutions. The results of this registry will provide valuable information on the current status of postoperative patients who receive Korean medicine treatments and evidence for reasonable decision-making in the Korean medicine healthcare system in the future. CLINICALTRIAL ClinicalTrials.gov Identifier: NCT03842098.