scholarly journals Guidelines for Data Acquisition, Quality and Curation for Observational Research Designs (DAQCORD)

2020 ◽  
Vol 4 (4) ◽  
pp. 354-359
Author(s):  
Ari Ercole ◽  
Vibeke Brinck ◽  
Pradeep George ◽  
Ramona Hicks ◽  
Jilske Huijben ◽  
...  

AbstractBackground:High-quality data are critical to the entire scientific enterprise, yet the complexity and effort involved in data curation are vastly under-appreciated. This is especially true for large observational, clinical studies because of the amount of multimodal data that is captured and the opportunity for addressing numerous research questions through analysis, either alone or in combination with other data sets. However, a lack of details concerning data curation methods can result in unresolved questions about the robustness of the data, its utility for addressing specific research questions or hypotheses and how to interpret the results. We aimed to develop a framework for the design, documentation and reporting of data curation methods in order to advance the scientific rigour, reproducibility and analysis of the data.Methods:Forty-six experts participated in a modified Delphi process to reach consensus on indicators of data curation that could be used in the design and reporting of studies.Results:We identified 46 indicators that are applicable to the design, training/testing, run time and post-collection phases of studies.Conclusion:The Data Acquisition, Quality and Curation for Observational Research Designs (DAQCORD) Guidelines are the first comprehensive set of data quality indicators for large observational studies. They were developed around the needs of neuroscience projects, but we believe they are relevant and generalisable, in whole or in part, to other fields of health research, and also to smaller observational studies and preclinical research. The DAQCORD Guidelines provide a framework for achieving high-quality data; a cornerstone of health research.

Author(s):  
Muhammad Perdana Airlangga

Venous thromboembolism is both more common and more complex to diagnose in patients who are pregnant than in those who are not pregnant. Pulmonary embolism and deep-vein thrombosis are the two components of a single disease called venous thromboembolism. Pulmonary embolism is the leading cause of maternal death in the developed world. Delayed diagnosis, delayed or inadequate treatment, and inadequate thromboprophylaxis account for many of the deaths due to venous thromboembolism. Successful strategies for the management of venous thromboembolism in nonpregnant patients have been established. However, many of the recommendations for the treatment of pregnant patients who have venous thromboembolism are not based on high-quality data; rather, they are derived from observational studies and extrapolation from studies involving nonpregnant patients. The purpose of this review is to provide a practical approach to the diagnosis, management, and prevention of venous thromboembolism in pregnant patients.


2020 ◽  
Author(s):  
Maryam Zolnoori ◽  
Mark D Williams ◽  
William B Leasure ◽  
Kurt B Angstman ◽  
Che Ngufor

BACKGROUND Patient-centered registries are essential in population-based clinical care for patient identification and monitoring of outcomes. Although registry data may be used in real time for patient care, the same data may further be used for secondary analysis to assess disease burden, evaluation of disease management and health care services, and research. The design of a registry has major implications for the ability to effectively use these clinical data in research. OBJECTIVE This study aims to develop a systematic framework to address the data and methodological issues involved in analyzing data in clinically designed patient-centered registries. METHODS The systematic framework was composed of 3 major components: visualizing the multifaceted and heterogeneous patient-centered registries using a data flow diagram, assessing and managing data quality issues, and identifying patient cohorts for addressing specific research questions. RESULTS Using a clinical registry designed as a part of a collaborative care program for adults with depression at Mayo Clinic, we were able to demonstrate the impact of the proposed framework on data integrity. By following the data cleaning and refining procedures of the framework, we were able to generate high-quality data that were available for research questions about the coordination and management of depression in a primary care setting. We describe the steps involved in converting clinically collected data into a viable research data set using registry cohorts of depressed adults to assess the impact on high-cost service use. CONCLUSIONS The systematic framework discussed in this study sheds light on the existing inconsistency and data quality issues in patient-centered registries. This study provided a step-by-step procedure for addressing these challenges and for generating high-quality data for both quality improvement and research that may enhance care and outcomes for patients. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/18366


10.2196/18366 ◽  
2020 ◽  
Vol 9 (10) ◽  
pp. e18366
Author(s):  
Maryam Zolnoori ◽  
Mark D Williams ◽  
William B Leasure ◽  
Kurt B Angstman ◽  
Che Ngufor

Background Patient-centered registries are essential in population-based clinical care for patient identification and monitoring of outcomes. Although registry data may be used in real time for patient care, the same data may further be used for secondary analysis to assess disease burden, evaluation of disease management and health care services, and research. The design of a registry has major implications for the ability to effectively use these clinical data in research. Objective This study aims to develop a systematic framework to address the data and methodological issues involved in analyzing data in clinically designed patient-centered registries. Methods The systematic framework was composed of 3 major components: visualizing the multifaceted and heterogeneous patient-centered registries using a data flow diagram, assessing and managing data quality issues, and identifying patient cohorts for addressing specific research questions. Results Using a clinical registry designed as a part of a collaborative care program for adults with depression at Mayo Clinic, we were able to demonstrate the impact of the proposed framework on data integrity. By following the data cleaning and refining procedures of the framework, we were able to generate high-quality data that were available for research questions about the coordination and management of depression in a primary care setting. We describe the steps involved in converting clinically collected data into a viable research data set using registry cohorts of depressed adults to assess the impact on high-cost service use. Conclusions The systematic framework discussed in this study sheds light on the existing inconsistency and data quality issues in patient-centered registries. This study provided a step-by-step procedure for addressing these challenges and for generating high-quality data for both quality improvement and research that may enhance care and outcomes for patients. International Registered Report Identifier (IRRID) DERR1-10.2196/18366


Author(s):  
Sethu Arun Kumar ◽  
Thirumoorthy Durai Ananda Kumar ◽  
Narasimha M Beeraka ◽  
Gurubasavaraj Veeranna Pujar ◽  
Manisha Singh ◽  
...  

Predicting novel small molecule bioactivities for the target deconvolution, hit-to-lead optimization in drug discovery research, requires molecular representation. Previous reports have demonstrated that machine learning (ML) and deep learning (DL) have substantial implications in virtual screening, peptide synthesis, drug ADMET screening and biomarker discovery. These strategies can increase the positive outcomes in the drug discovery process without false-positive rates and can be achieved in a cost-effective way with a minimum duration of time by high-quality data acquisition. This review substantially discusses the recent updates in AI tools as cheminformatics application in medicinal chemistry for the data-driven decision making of drug discovery and challenges in high-quality data acquisition in the pharmaceutical industry while improving small-molecule bioactivities and properties.


2018 ◽  
Vol 47 (2) ◽  
pp. 124-130 ◽  
Author(s):  
Andras Nagy ◽  
Ingo Jahn

Today renewable energies, particularly wind energy are important to meet 24 hour energy demands while keeping car­bon emissions low. As the cost of renewable energies are high, improving their efficiency is a key factor to reduce energy prices. High quality experimental data is essential to develop deeper understanding of the existing systems and to improve their efficiency.This paper introduces an unmanned airborne data acquisition system that can measure properties around wind-turbines to pro­vide new insight into aerodynamic performance and loss mech­anisms and to provide validation data for wind-turbine design methods. The described system is a flexible and portable platform for collecting high quality data from existing full-scale wind-tur­bine installations. This allows experiments to be conducted with­out scaling and with real-world boundary conditions.The system consists of two major parts: the unmanned flying platform (UAV) and the data acquisition system (DAQ). For the UAV a commercially available unit is selected, which has the ability to fly a route autonomously with sufficient preci­sion, the ability to hover, and sufficient load capacity to carry the DAQ system. The DAQ system in contrast, is developed in-house to achieve a high quality data collection capability and to increase flexibility.


Author(s):  
Mary Kay Gugerty ◽  
Dean Karlan

Without high-quality data, even the best-designed monitoring and evaluation systems will collapse. Chapter 7 introduces some the basics of collecting high-quality data and discusses how to address challenges that frequently arise. High-quality data must be clearly defined and have an indicator that validly and reliably measures the intended concept. The chapter then explains how to avoid common biases and measurement errors like anchoring, social desirability bias, the experimenter demand effect, unclear wording, long recall periods, and translation context. It then guides organizations on how to find indicators, test data collection instruments, manage surveys, and train staff appropriately for data collection and entry.


2019 ◽  
Vol 14 (3) ◽  
pp. 338-366
Author(s):  
Kashif Imran ◽  
Evelyn S. Devadason ◽  
Cheong Kee Cheok

This article analyzes the overall and type of developmental impacts of remittances for migrant-sending households (HHs) in districts of Punjab, Pakistan. For this purpose, an HH-based human development index is constructed based on the dimensions of education, health and housing, with a view to enrich insights into interactions between remittances and HH development. Using high-quality data from a HH micro-survey for Punjab, the study finds that most migrant-sending HHs are better off than the HHs without this stream of income. More importantly, migrant HHs have significantly higher development in terms of housing in most districts of Punjab relative to non-migrant HHs. Thus, the government would need policy interventions focusing on housing to address inequalities in human development at the district-HH level, and subsequently balance its current focus on the provision of education and health.


2017 ◽  
Vol 47 (1) ◽  
pp. 46-55 ◽  
Author(s):  
S Aqif Mukhtar ◽  
Debbie A Smith ◽  
Maureen A Phillips ◽  
Maire C Kelly ◽  
Renate R Zilkens ◽  
...  

Background: The Sexual Assault Resource Center (SARC) in Perth, Western Australia provides free 24-hour medical, forensic, and counseling services to persons aged over 13 years following sexual assault. Objective: The aim of this research was to design a data management system that maintains accurate quality information on all sexual assault cases referred to SARC, facilitating audit and peer-reviewed research. Methods: The work to develop SARC Medical Services Clinical Information System (SARC-MSCIS) took place during 2007–2009 as a collaboration between SARC and Curtin University, Perth, Western Australia. Patient demographics, assault details, including injury documentation, and counseling sessions were identified as core data sections. A user authentication system was set up for data security. Data quality checks were incorporated to ensure high-quality data. Results: An SARC-MSCIS was developed containing three core data sections having 427 data elements to capture patient’s data. Development of the SARC-MSCIS has resulted in comprehensive capacity to support sexual assault research. Four additional projects are underway to explore both the public health and criminal justice considerations in responding to sexual violence. The data showed that 1,933 sexual assault episodes had occurred among 1881 patients between January 1, 2009 and December 31, 2015. Sexual assault patients knew the assailant as a friend, carer, acquaintance, relative, partner, or ex-partner in 70% of cases, with 16% assailants being a stranger to the patient. Conclusion: This project has resulted in the development of a high-quality data management system to maintain information for medical and forensic services offered by SARC. This system has also proven to be a reliable resource enabling research in the area of sexual violence.


2019 ◽  
Vol 101 (4) ◽  
pp. 658-666 ◽  
Author(s):  
Romain Gauriot ◽  
Lionel Page

We provide evidence of a violation of the informativeness principle whereby lucky successes are overly rewarded. We isolate a quasi-experimental situation where the success of an agent is as good as random. To do so, we use high-quality data on football (soccer) matches and select shots on goal that landed on the goal posts. Using nonscoring shots, taken from a similar location on the pitch, as counterfactuals to scoring shots, we estimate the causal effect of a lucky success (goal) on the evaluation of the player's performance. We find clear evidence that luck is overly influencing managers' decisions and evaluators' ratings. Our results suggest that this phenomenon is likely to be widespread in economic organizations.


Sign in / Sign up

Export Citation Format

Share Document