Sharing of individual participant data is encouraged by the International Committee of Medical Journal Editors. We analyzed clinical trial registry data from ClinicalTrials.gov (CTG) and determined the proportion of trials sharing de-identified Individual Participant Data (IPD). We looked at 3,138 medical conditions (as Medical Subject Heading terms). Overall, 10.8% of trials with first registration date after December 1, 2015 answered 'Yes' to plan to share de-identified IPD data. This sharing rate ranges between 0% (biliary tract neoplasms) to 72.2% (meningitis, meningococcal) when analyzed by disease that is focus of a study. Via a predictive model, we found that studies that deposited basic summary results data to CTG results registry, large studies and phase 3 interventional studies are most likely to declare intent to share IPD data. As part of an HIV common data element analysis project, we further compared a body of HIV trials (24% sharing rate) to other diseases.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7153161PMC

Publication Analysis

Top Keywords

individual participant
12
participant data
12
sharing individual
8
data
8
ipd data
8
sharing rate
8
sharing
5
data clinical
4
trials
4
clinical trials
4

Similar Publications

Longitudinal Outcomes in Noonan Syndrome.

Genet Med

January 2025

Division of Human Genetics, Children's Hospital of Philadelphia; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

Purpose: Noonan syndrome and related disorders (NS) are multisystemic conditions affecting approximately 1:1000 individuals. Previous natural history studies were conducted prior to widespread comprehensive genetic testing. This study provides updated longitudinal natural history data in participants with molecularly confirmed NS.

View Article and Find Full Text PDF

Objective: This review synthesizes qualitative research about the experiences of parental caregivers enhancing their children's health after making the decision to not vaccinate their preschool children. This review aims to help health care providers understand the parental work involved in caring for under-vaccinated or unvaccinated children.

Introduction: Much of the current qualitative research literature about parents who are vaccine-hesitant or who decide not to vaccinate their children focuses on parental perceptions about the safety and efficacy of vaccines and decision-making.

View Article and Find Full Text PDF

Impact of Frailty on Antihypertensive Treatment in Older Adults.

Hypertension

January 2025

The George Institute for Global Health, Faculty of Medicine, University of New South Wales, Newtown, Australia (L.C., S.Y., N.E., M.W., T.L., Y.G., C.S.A., K.H., X.C., R.P.).

Background: The association between systolic blood pressure and all-cause mortality differs between frail and nonfrail individuals, highlighting uncertainties about the effectiveness of antihypertensive treatments in frail populations.

Methods: Using data from the SHEP trial (Systolic Hypertension in the Elderly Program), a baseline frailty index (FI), including 55 variables, was constructed. Fine-Gray subdistribution hazard models and Cox proportional hazards regression models were used to explore the association between baseline FI and the risks of stroke, cardiovascular disease, and all-cause death, as well as to examine whether the impact of antihypertensive treatment on these outcomes was modified by baseline FI.

View Article and Find Full Text PDF

Determinants of Racial and Ethnic Differences in Maternal Cardiovascular Health in Early Pregnancy.

Circ Cardiovasc Qual Outcomes

January 2025

Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL. (N.A.C., X.H., L.C.P., H.N., N.S.S., A.M.P., P.G., D.M.L.-J., K.N.K., S.S.K.).

Background: Suboptimal cardiovascular health (CVH) in pregnancy is associated with adverse maternal and offspring outcomes. To guide public health efforts to reduce disparities in maternal CVH, we determined the contribution of individual- and neighborhood-level factors to racial and ethnic differences in early pregnancy CVH.

Methods: We included nulliparous individuals with singleton pregnancies who self-identified as Hispanic, non-Hispanic Black (NHB), or non-Hispanic White (NHW) and participated in the nuMoM2b cohort study (Nulliparous Pregnancy Outcomes Study: Monitoring Mothers-to-Be).

View Article and Find Full Text PDF

Exposure Contrasts of Women Aged 40-79 Years during the Household Air Pollution Intervention Network Randomized Controlled Trial.

Environ Sci Technol

January 2025

Division of Environmental Health Sciences, School of Public Health, University of California, Berkeley, California 94609, United States.

Exposure to household air pollution has been linked to adverse health outcomes among women aged 40-79. Little is known about how shifting from biomass cooking to a cleaner fuel like liquefied petroleum gas (LPG) could impact exposures for this population. We report 24-h exposures to particulate matter (PM), black carbon (BC), and carbon monoxide (CO) among women aged 40 to <80 years participating in the Household Air Pollution Intervention Network trial.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!