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NIH-Funded Pediatric Clinical Trial Data Not Readily Available, Study Shows

A study in JAMA Network Open by researchers from Boston Children's Hospital and elsewhere finds that data for most National Institutes of Health-funded pediatric clinical trials are not readily available for reuse. Starting January 25, 2023, the NIH requires researchers to describe their plans and methods to share participant data. This cross-sectional study analyzed NIH-funded pediatric clinical trials with grants completed between 2017 and 2019 and trial results published in peer-reviewed publications by June 30, 2022. Among 213 pediatric clinical trial publications analyzed, only 32.4 percent or 69 studies, included a data-sharing statement, and 29.1 percent or 62 declared that data were available. The researchers note that publications in the International Committee of Medical Journal Editors (ICMJE)-affiliated journals were not more likely to provide data-sharing reports than those in non-ICMJE-affiliated journals. "These findings are consistent with prior studies indicating that access to individual trial participant data remains limited, even among trials published in ICMJE-affiliated journals," the authors write. They note, though, that their findings can't be generalized to trials studying adults or to those funded by non-NIH entities.


The Scan

Positive Framing of Genetic Studies Can Spark Mistrust Among Underrepresented Groups

Researchers in Human Genetics and Genomics Advances report that how researchers describe genomic studies may alienate potential participants.

Small Study of Gene Editing to Treat Sickle Cell Disease

In a Novartis-sponsored study in the New England Journal of Medicine, researchers found that a CRISPR-Cas9-based treatment targeting promoters of genes encoding fetal hemoglobin could reduce disease symptoms.

Gut Microbiome Changes Appear in Infants Before They Develop Eczema, Study Finds

Researchers report in mSystems that infants experienced an enrichment in Clostridium sensu stricto 1 and Finegoldia and a depletion of Bacteroides before developing eczema.

Acute Myeloid Leukemia Treatment Specificity Enhanced With Stem Cell Editing

A study in Nature suggests epitope editing in donor stem cells prior to bone marrow transplants can stave off toxicity when targeting acute myeloid leukemia with immunotherapy.