Characterization of Missing Data in Clinical Registry Studies

Mendelsohn, Aaron B.; Dreyer, Nancy A; Mattox, Pattra; Su, Zhaohui; Swenson, Anna; Li, Rui; Turner, J. Rick; Velentgas, Priscilla

doi:10.1177/2168479014532259

Cited by 16 publications

(12 citation statements)

References 19 publications

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“…Location in the US was defined as West, Midwest, Northeast, or South by US census classification . Missing data in covariates was assessed and assumed to be missing at random, as missingness is associated with CF center ID, perhaps due to some CF centers not collecting complete datasets.…”

Section: Methodsmentioning

confidence: 99%

Pulmonary function disparities exist and persist in Hispanic patients with cystic fibrosis: A longitudinal analysis

McGarry

Neuhaus

Nielson

et al. 2017

Pediatric Pulmonology

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Background Hispanic patients with cystic fibrosis (CF) have decreased life expectancy compared to non-Hispanic white patients. Pulmonary function is a main predictor of life expectancy in CF. Ethnic differences in pulmonary function in CF have been understudied. The objective was to compare longitudinal pulmonary function between Hispanic and non-Hispanic white patients with CF. Methods This cohort study of 15,018 6–25 years old patients in the CF Foundation Patient Registry from 2008 to 2013 compared FEV1 percent predicted and longitudinal change in FEV1 percent predicted in Hispanic to non-Hispanic white patients. We used linear mixed effects models with patient-specific slopes and intercepts, adjusting for 14 demographic and clinical variables. We did sub-analyses by CFTR class, F508del copies, and PERT use. Results Hispanic patients had lower FEV1 percent predicted (79.9%) compared with non-Hispanic white patients (85.6%); (−5.8%, 95% CI −6.7% to −4.8%, p<0.001), however, there was no difference in FEV1 decline over time. Patients on PERT had a larger difference between Hispanic and non-Hispanic white patients in FEV1 percent predicted than patients not on PERT (−6.0% vs. −4.1%, p=0.02). The ethnic difference in FEV1 percent predicted was not statistically significant between CFTR classes (Class I–III: −6.1%, Class IV–V: −5.9%, Unclassified: −5.7%, p>0.05) or between F508del copies (None: −7.6%, Heterozygotes: −5.6%, Homozygotes: −5.3%, p>0.05). Conclusions Disparities in pulmonary function exist in Hispanic patients with CF early in life and then persist without improving or worsening over time. It is valuable to investigate the factors contributing to pulmonary function in Hispanic patients with CF.

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Section: Methodsmentioning

confidence: 99%

Pulmonary function disparities exist and persist in Hispanic patients with cystic fibrosis: A longitudinal analysis

McGarry

Neuhaus

Nielson

et al. 2017

Pediatric Pulmonology

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“…10 The discrepancy is because of inherent exclusion of patients not seen at least annually by an accredited cystic fibrosis care center and patients who do not consent to data collection. 47,48 Efforts to provide national surveillance data for cystic fibrosis have demonstrated that the disease occurs more frequently than previously thought among populations of non-European descent. 48 In addition, population health data for cystic fibrosis continues to demonstrate improved long-term survival.…”

Section: Jama Health Forum | Special Communicationmentioning

confidence: 99%

Improving Outcomes for Patients With Sickle Cell Disease in the United States

et al. 2021

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IMPORTANCEAlthough considered a rare disease with fewer than 200 000 cases annually in the US, sickle cell disease (SCD) is the most common and clinically significant inherited blood disorder in the US and worldwide. Despite the relatively high prevalence of this rare disease, there is a paucity of longitudinal data available to evaluate access to care or to identify quality metrics.OBSERVATIONS This review discusses why systematic data collection for SCD through populationwide surveillance programs can help to facilitate progress in treatment. It also explores the importance of having both a longitudinal clinical registry and a national surveillance program to improve resource utilization, clinical outcomes, and provide an equitable foundation for care. CONCLUSIONS AND RELEVANCEFederal funding should be appropriately allocated to establish and maintain a national SCD surveillance system supported by the Centers for Disease Control and Prevention, as well as a longitudinal registry available at recognized sickle cell centers.

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“…However, none of these studies focused on accuracy of clinical registries (32) or accuracy in data population process. There are three main factors impacting data accuracy 1) errors in original resources (38) 2) missing data (39–41) and 3) human errors (42). The first one could be fixed to some extent with cross-referencing different resources such as clinical notes, surgery notes, structured data, and lab tests.…”

Section: Related Workmentioning

confidence: 99%

“…Mendelsohn at el. (39) studied and characterized missing data in clinical registries and associated factors. Norris at el.…”

Section: Related Workmentioning

confidence: 99%

Need of informatics in designing interoperable clinical registries

Rastegar-Mojarad

Sohn

Wang

et al. 2017

International Journal of Medical Informatics

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Clinical registries are designed to collect information relating to a particular condition for research or quality improvement. Intuitively, informatics in the area of data management and extraction plays a central role in clinical registries. Due to various reasons such as lack of informatics awareness or expertise, there may be little informatics involvement in designing clinical registries. In this paper, we studied a clinical registry from two critical perspectives, data quality and interoperability, where informatics can play a role. We evaluated these two aspects of an existing registry, Gynecology Surgery Registry, by mapping data elements and value sets, used in the registry, to a standardized terminology, SNOMED-CT. The results showed that majority of the values are ad-hoc and only 6 of 91 procedures in the registry could be mapped to the SNOMED-CT. To tackle this issue, we assessed the feasibility of automated data abstraction process, by training machine learning classifiers, based on existing manually extracted data. These classifiers achieved a reasonable average F-measure of 0.94. We concluded that more informatics engagement is needed to improve the interoperability, reusability, and quality of the registry.

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Characterization of Missing Data in Clinical Registry Studies

Cited by 16 publications

References 19 publications

Pulmonary function disparities exist and persist in Hispanic patients with cystic fibrosis: A longitudinal analysis

Pulmonary function disparities exist and persist in Hispanic patients with cystic fibrosis: A longitudinal analysis

Improving Outcomes for Patients With Sickle Cell Disease in the United States

Need of informatics in designing interoperable clinical registries

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