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opencc-zeroSep 2020View details →

Patient or family perceived deterioration in functional status and outcome after Intensive Care admission: a retrospective cohort analysis of routinely collected data

Objective: To explore the association of patient or family reported functional deterioration (defined by a single question) in the preceding year, with mortality outcome for those admitted to the Intensive Care Unit (ICU). Design: Retrospective observational analysis of a routinely collected data source. Participants: Patients that were admitted to the ICU at Northwick Park Hospital, London North West University Healthcare NHS Trust between 1/10/2017 to 15/6/2019 were included. Patients were excluded if they had a prior ICU admission during the existing hospital episode or if information on functional deterioration could not be retrieved from either the patient or their advocate. Primary Outcomes: Mortality at the point of hospital discharge and 1 year following admission to the ICU. Results: Of the 1006 patients who were admitted to the ICU during the study period, information on functional deterioration was available for 621 patients who were included in the analysis. From these, 251 (40.4%) patients had patient or family reported functional deterioration in the preceding year, whilst 370 (59.6%) patients had a perceived stable functional baseline. Comparing the two groups, mortality was significantly higher in those who had functionally deteriorated compared to those with stable baseline function, at the point of hospital discharge (45.4% versus 25.9%; P<0.0001) and at 1 year (59.4% versus 33.0%; P<0.0001). Conclusion: Patient or family reported functional deterioration was significantly associated with higher mortality at the point of hospital discharge and at 1 year. The concept of functional deterioration in the lead up to ICU admission warrants further exploration.

opencc-zeroDec 2014View details →

Data from: The REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) statement: methods for arriving at consensus and developing reporting guidelines

Objective: Routinely collected health data, collected for administrative and clinical purposes, without specific a priori research questions, are increasingly used for observational, comparative effectiveness, health services research, and clinical trials. The rapid evolution and availability of routinely collected data for research has brought to light specific issues not addressed by existing reporting guidelines. The aim of the present project was to determine the priorities of stakeholders in order to guide the development of the REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) statement. Methods: Two modified electronic Delphi surveys were sent to stakeholders. The first determined themes deemed important to include in the RECORD statement, and was analyzed using qualitative methods. The second determined quantitative prioritization of the themes based on categorization of manuscript headings. The surveys were followed by a meeting of RECORD working committee, and re-engagement with stakeholders via an online commentary period. Results: The qualitative survey (76 responses of 123 surveys sent) generated 10 overarching themes and 13 themes derived from existing STROBE categories. Highest-rated overall items for inclusion were: Disease/exposure identification algorithms; Characteristics of the population included in databases; and Characteristics of the data. In the quantitative survey (71 responses of 135 sent), the importance assigned to each of the compiled themes varied depending on the manuscript section to which they were assigned. Following the working committee meeting, online ranking by stakeholders provided feedback and resulted in revision of the final checklist. Conclusions: The RECORD statement incorporated the suggestions provided by a large, diverse group of stakeholders to create a reporting checklist specific to observational research using routinely collected health data. Our findings point to unique aspects of studies conducted with routinely collected health data and the perceived need for better reporting of methodological issues.

ClinicalTrials.gov28/100

Retrospective Data Collection of Routine Use With Spectra Optia® for Platelet Depletions

ClinicalTrials.gov study NCT02308787. IPD Sharing: Not stated. Countries: 2. Publications: 0.

ClinicalTrials.gov28/100

Data Collection of Routine Clinical Use With the Spectra Optia® Apheresis System for White Blood Cell Depletion

ClinicalTrials.gov study NCT02302365. IPD Sharing: Not stated. Countries: 3. Publications: 0.

publicApr 2016View details →

Data from: The REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) statement: methods for arriving at consensus and developing reporting guidelines

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publicSep 2020View details →

Patient or family perceived deterioration in functional status and outcome after Intensive Care admission: a retrospective cohort analysis of routinely collected data

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publicMay 2021View details →

Utility of routinely collected electronic health records data to support effectiveness evaluations in Inflammatory Bowel Disease: A pilot study of Tofacitinib

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Evaluation of Parameters Collected From Routine Data for the Diagnosis of Sepsis and Septic Shock and Their Influence on Time to Diagnosis and Patient Outcome

ClinicalTrials.gov study NCT05383963. IPD Sharing: NO. Countries: 1. Publications: 0.

A Prospective Registry to Enable Collection of Standardized Routine Care Oncology Patient Data

ClinicalTrials.gov study NCT06877884. IPD Sharing: UNDECIDED. Countries: 1. Publications: 0.

A Risk Score for Prediction of Gestational Diabetesmellitus in China Using Routinely Collected Hospital Data

ClinicalTrials.gov study NCT07160920. IPD Sharing: NO. Countries: 1. Publications: 0.

Study for Collection of Aflibercept Data in Routine Practice

ClinicalTrials.gov study NCT02811692. IPD Sharing: Not stated. Countries: 1. Publications: 0.

Routinely Collected Clinical Data and Evaluation of Antimicrobial Target Attainment

ClinicalTrials.gov study NCT06427317. IPD Sharing: UNDECIDED. Countries: 1. Publications: 0.

Study to Collect in a Real-world populatIon Data on the Treatment Pattern of Secukinumab in Adult Patients With Moderate to Severe Hidradenitis Suppurativa (HS) in Routine Clinical Practice in the Rus

ClinicalTrials.gov study NCT06517732. IPD Sharing: NO. Countries: 1. Publications: 0.

A Study to Collect Data on the Treatment Pattern of Xarelto + Acetylsalicylic Acid in the Routine Clinical Practice in Patients Who Are Suffering From a Condition That Narrows the Blood Vessels Supply

ClinicalTrials.gov study NCT04401761. IPD Sharing: NO. Countries: 10. Publications: 0.

Predicting Nurse Staffing Requirements From Routinely Collected Data

ClinicalTrials.gov study NCT06923943. IPD Sharing: NO. Countries: 0. Publications: 0.

ClinicalTrials.gov20/100

Data Collection of PillCamTM SB3 Capsule Endoscopy and Device-Assisted Enteroscopy Routine Care Procedures (GPS Study)

ClinicalTrials.gov study NCT05450393. IPD Sharing: NO. Countries: 0. Publications: 0.