Alex Cheng
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View article: Opportunities, barriers, and remedies for implementing REDCap integration with electronic health records via Fast Healthcare Interoperability Resources (FHIR)
Opportunities, barriers, and remedies for implementing REDCap integration with electronic health records via Fast Healthcare Interoperability Resources (FHIR) Open
Objective Accelerate adoption of clinical research technology that obtains electronic health record (EHR) data through HL7 Fast Healthcare Interoperability Resources (FHIR). Materials and Methods Based on experience helping institutions im…
View article: Accuracy of Large Language Models in Generating Rare Disease Differential Diagnosis Using Key Clinical Features
Accuracy of Large Language Models in Generating Rare Disease Differential Diagnosis Using Key Clinical Features Open
Generating differential diagnoses for rare disease patients can be time intensive and highly dependent on the background and training of the evaluating physicians. Large language models (LLMs) have the potential to complement this process …
View article: Next generation performance status: digital health technologies across the lung cancer continuum
Next generation performance status: digital health technologies across the lung cancer continuum Open
Lung cancer survival rates have greatly benefited from recent advances in therapies and screening. New digital health technologies offer clinicians another way to personalize and enhance care for these patients. For example, emerging techn…
View article: Supporting rapid innovation in research data capture and management: the REDCap external module framework
Supporting rapid innovation in research data capture and management: the REDCap external module framework Open
Objectives Establishing a robust and secure framework allowing creation and sharing of custom features within the REDCap electronic data capture platform. Materials and Methods In partnership with REDCap Consortium members, we developed a …
View article: Targeted Normoxemia and Supplemental Oxygen–Free Days in Critically Injured Adults
Targeted Normoxemia and Supplemental Oxygen–Free Days in Critically Injured Adults Open
Importance Supplemental oxygen is fundamental to caring for critically injured adults but can expose them to excess inspired oxygen. Objective To determine the safety and effectiveness of targeting normoxemia in critically ill trauma patie…
View article: Standards and infrastructure for multisite deployment of the research participant perception survey
Standards and infrastructure for multisite deployment of the research participant perception survey Open
Objectives To develop and disseminate a technical framework for administering the Research Participant Perception Survey (RPPS) and aggregating data across institutions using REDCap. Materials and Methods Six RPPS Steering Committee (RSC) …
View article: Best practices for clinical trials data harmonization and sharing on NHLBI bioData catalyst (BDC) learned from CONNECTS network COVID-19 studies
Best practices for clinical trials data harmonization and sharing on NHLBI bioData catalyst (BDC) learned from CONNECTS network COVID-19 studies Open
The need for collaborative and transparent sharing of COVID-19 clinical trial and large-scale observational study data to accelerate scientific discovery and inform clinical practice is critical. Responsible data-sharing requires addressin…
View article: What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data
What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data Open
Background: Research participants” feedback about their participation experiences offers critical insights for improving programs. A shared Empowering the Participant Voice (EPV) infrastructure enabled a multiorganization collaborative to …
View article: Consortium-driven rapid software validation for Research Electronic Data Capture (REDCap)
Consortium-driven rapid software validation for Research Electronic Data Capture (REDCap) Open
There is a growing trend for studies run by academic and nonprofit organizations to have regulatory submission requirements. As a result, there is greater reliance on REDCap, an electronic data capture (EDC) widely used by researchers in t…
View article: NCOG-08. A RARE PRIMARY CNS T-CELL LYMPHOMA CASE: 12-YEAR FOLLOW-UP AFTER CHEMOTHERAPY
NCOG-08. A RARE PRIMARY CNS T-CELL LYMPHOMA CASE: 12-YEAR FOLLOW-UP AFTER CHEMOTHERAPY Open
INTRODUCTION Primary central nervous system (CNS) T-cell lymphoma (PCNSTL) is a rare hematological malignancy. There is mere literature to guide the treatment. CASE REPORT This study is an update on our previously reported case at SNO in 2…
View article: Extracting Electronic Health Record Neuroblastoma Treatment Data With High Fidelity Using the REDCap Clinical Data Interoperability Services Module
Extracting Electronic Health Record Neuroblastoma Treatment Data With High Fidelity Using the REDCap Clinical Data Interoperability Services Module Open
PURPOSE Although the International Neuroblastoma Risk Group Data Commons (INRGdc) has enabled seminal large cohort studies, the research is limited by the lack of real-world, electronic health record (EHR) treatment data. To address this l…
View article: 177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice
177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice Open
OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a 6-CTSA Rockefeller-led collaboration to developcustom REDCap infrastructure to collect participant feedback using the validated Research Participant Perception Survey (RPPS), de…
View article: Identifying and Extracting Rare Diseases and Their Phenotypes with Large Language Models
Identifying and Extracting Rare Diseases and Their Phenotypes with Large Language Models Open
Purpose Phenotyping is critical for informing rare disease diagnosis and treatment, but disease phenotypes are often embedded in unstructured text. While natural language processing (NLP) can automate extraction, a major bottleneck is deve…
View article: Impact of financial compensation on enrollment and participation in a remote, mobile-app based research study
Impact of financial compensation on enrollment and participation in a remote, mobile-app based research study Open
Background: There is no consensus on how to determine appropriate financial compensation for research recruitment. Selecting incentive amounts that are reasonable and respectful, without undue inducement, remains challenging. Previously, w…
View article: Fielding the research participant perception survey to evaluate a culturally tailored Latinx cohort study
Fielding the research participant perception survey to evaluate a culturally tailored Latinx cohort study Open
Introduction: Latinx populations are underrepresented in clinical research. Asking Latinx research participants about their research experiences, barriers, and facilitators could help to improve research participation for these populations…
View article: Empowering the Participant Voice (EPV): Design and implementation of collaborative infrastructure to collect research participant experience feedback at scale
Empowering the Participant Voice (EPV): Design and implementation of collaborative infrastructure to collect research participant experience feedback at scale Open
Empowering the Participant Voice (EPV) is an NCATS-funded six-CTSA collaboration to develop, demonstrate, and disseminate a low-cost infrastructure for collecting timely feedback from research participants, fostering trust, and providing d…
View article: 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice Open
OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a Rockefeller-led 6-CTSA consortium that aims to collect research participant feedback through new Research Participant Perception Survey (RPPS)/REDCap infrastructure and data agg…
View article: Impact of COVID-19 in patients on active melanoma therapy and with history of melanoma
Impact of COVID-19 in patients on active melanoma therapy and with history of melanoma Open
Introduction COVID-19 particularly impacted patients with co-morbid conditions, including cancer. Patients with melanoma have not been specifically studied in large numbers. Here, we sought to identify factors that associated with COVID-19…
View article: ResearchMatch on FHIR: Development and evaluation of a recruitment registry and electronic health record system interface for volunteer profile completion
ResearchMatch on FHIR: Development and evaluation of a recruitment registry and electronic health record system interface for volunteer profile completion Open
Background: Obtaining complete and accurate information in recruitment registries is essential for matching potential participants to research studies for which they qualify. Since electronic health record (EHR) systems are required to mak…
View article: Evaluating automated electronic case report form data entry from electronic health records
Evaluating automated electronic case report form data entry from electronic health records Open
Background: Many clinical trials leverage real-world data. Typically, these data are manually abstracted from electronic health records (EHRs) and entered into electronic case report forms (CRFs), a time and labor-intensive process that is…
View article: Making Clinical Data Acquisition Standards Harmonization (CDASH) Electronic Case Report Forms Available on the REDCap Shared Data Instrument Library
Making Clinical Data Acquisition Standards Harmonization (CDASH) Electronic Case Report Forms Available on the REDCap Shared Data Instrument Library Open
Introduction: A guiding principle behind the development and deployment of the REDCap data management platform has always included attention to workflow design that allows easy implementation of best practices for clinical and translationa…
View article: HL7 FHIR-based tools and initiatives to support clinical research: a scoping review
HL7 FHIR-based tools and initiatives to support clinical research: a scoping review Open
Objectives The HL7® fast healthcare interoperability resources (FHIR®) specification has emerged as the leading interoperability standard for the exchange of healthcare data. We conducted a scoping review to identify trends and gaps in the…
View article: MyCap: a flexible and configurable platform for mobilizing the participant voice
MyCap: a flexible and configurable platform for mobilizing the participant voice Open
This paper provides a description of the MyCap data collection platform, utilization metrics, and vignettes associated with use from diverse research institutions. MyCap is a participant-facing mobile application for survey data collection…
View article: 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise
471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise Open
OBJECTIVES/GOALS: Six CTSA sites formed a collaboration to DEVELOP, DEMONSTRATE, AND DISSEMINATE new infrastructure to streamline collection and analysis of research participant feedback, using the Research Participant Perception Survey (R…
View article: Identification of a promiscuous conserved CTL epitope within the SARS-CoV-2 spike protein
Identification of a promiscuous conserved CTL epitope within the SARS-CoV-2 spike protein Open
ABSTRACTThe COVID-19 disease caused by infection with SARS-CoV-2 and its variants is devastating to the global public health and economy. To date, over a hundred COVID-19 vaccines are known to be under development, and the few that have be…
View article: Comparison of Wild Type DNA Sequence of Spike Protein from SARS-CoV-2 with Optimized Sequence on The Induction of Protective Responses Against SARS-Cov-2 Challenge in Mouse Model
Comparison of Wild Type DNA Sequence of Spike Protein from SARS-CoV-2 with Optimized Sequence on The Induction of Protective Responses Against SARS-Cov-2 Challenge in Mouse Model Open
Genetic optimization of Nucleic Acid immunogens is important for potentially improving their immune potency. A COVID-19 DNA vaccine is in phase III clinical trial which is based on a promising highly developable technology platform. Here, …
View article: Development and implementation of the National Heart, Lung, and Blood Institute COVID-19 common data elements
Development and implementation of the National Heart, Lung, and Blood Institute COVID-19 common data elements Open
Background: Coronavirus Disease 2019 (COVID-19) instigated a flurry of clinical research activity. The unprecedented pace with which trials were launched left an early void in data standardization, limiting the potential for subsequent dat…