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Data Sharing Works

Seven years ago, NIH, FDA, researchers from industry, academia, and some nonprofit groups got together to find biomarkers for Alzheimer's disease. Now, the New York Times' Gina Kolata says the collaboration has resulted in several papers on early diagnosis of Alzheimer's using PET scans and spinal fluid tests, and more than 100 drug studies in progress. The key to the project, Kolata says, is the data sharing aspect. The data the researchers gathered was free to anyone who wanted it. "No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort," she writes. Though the researchers worried at first about how their data would be used, they realized they had no choice but to collaborate with as many people as possible in order to get any results. The collaboration is already serving as a model for similar efforts against Parkinson's disease, Kolata writes.

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.