WIRED: Dependent on Facebook Groups? Here’s How to Break Free

WIRED: Dependent on Facebook Groups? Here’s How to Break Free. “In this group, and other similar Facebook groups I belong to, people ask for extra vials of insulin, a spare continuous glucose monitor, supplies that will help their children survive until morning and beyond. I don’t know what I would do without these circles that I go to daily for input from more experienced parents of kids with type 1 diabetes, and, occasionally, simply to express sadness that my son has to struggle with this disease. Complicating my reliance on Facebook groups is the unfortunate fact that I, like many others, have serious issues with Facebook, Meta, and Mark Zuckerberg.”

UPI: Massive data-sharing effort to help doctors diagnose rare diseases across Europe

UPI: Massive data-sharing effort to help doctors diagnose rare diseases across Europe. “Doctors and medical researchers in Europe have undertaken a massive data-sharing project they hope will aid the diagnosis of rare disease. In a series of papers, published Tuesday in the European Journal of Human Genetics, researchers demonstrated how reanalysis of genomic and phenotypic data from patients with rare diseases — when combined with wide-scale data sharing — can increased the odds of accurate diagnosis.”

Drugs .com: New Database Shows ‘Rare’ Diseases Are Not So Rare Worldwide

Drugs .com: New Database Shows ‘Rare’ Diseases Are Not So Rare Worldwide. “A disease is considered rare when it affects fewer than five in 10,000 people, according to a European definition. Until now, it’s been difficult to gauge how widespread rare diseases are. But a team led by a French research institute has analyzed the scientific literature on thousands of rare diseases and created a database that makes it possible to estimate how many people worldwide have them.”

Scope Stanford: New algorithm could accelerate diagnosis of genetic diseases using clinical records

Scope Stanford: New algorithm could accelerate diagnosis of genetic diseases using clinical records. “In a continued effort to speed up the diagnostic process of severe genetic diseases, Stanford’s Gill Bejerano, PhD, and his colleagues have developed a new algorithm that can quickly locate important disease-related information within a patient’s medical record.”

eHealthNews: Sierra Leone Launches Ebola Database

eHealthNews: Sierra Leone Launches Ebola Database . “The SLED is based on information recorded during the Ebola epidemic by thousands of Sierra Leonean surveillance officers, burial team members, laboratory technicians and data managers. The data in the SLED is from more than 500,000 alerts, burial and other patient records, creating the most complete collection of data from the 2014 – 2016 Ebola epidemic.” Based on this article and the other ones I was able to find, I don’t think this will be fully open. I think it will be available for researchers via the CDC.

Public News Service: New Website Explores Missouri’s Health by Neighborhood

Public News Service: New Website Explores Missouri’s Health by Neighborhood. “A new state website has launched, and Missourians can use it to find out about health issues in their area because it narrows them down to specific communities across the state. [The site] is a joint effort of the Missouri Hospital Association and University of Missouri Extension Center that allows anyone to look up health issues, even by ZIP Code.”

University of Pennsylvania: New Open-access Data Resource Aims to Bolster Collaboration in Global Infectious Disease Research

University of Pennsylvania: New Open-access Data Resource Aims to Bolster Collaboration in Global Infectious Disease Research. “A single epidemiological study—tracking the acquisition of functional resistance to malaria, or the relationship of diarrheal disease to developmental outcomes—may involve tens of thousands of clinical observations on thousands of participants from multiple countries. To overcome these hurdles, an international team of researchers has launched the Clinical Epidemiology Database, an open-access online resource enabling investigators to maximize the utility and reach of their data and to make optimal use of information released by others.”

Motherboard: When an AI Invents Diseases, You End Up With ‘Penis Arthritis’

Motherboard: When an AI Invents Diseases, You End Up With ‘Penis Arthritis’. “Scary-sounding, futuristic diseases are a time-honored trope of science fiction. But if you’re short on ideas, a friendly neural network can help you invent a condition that’s adequately unnerving—as long as you give it enough time to learn what sounds disease-y.” “Tossy Blanter”!

New Online Tool Designed to Track Disease Outbreaks and Epidemics

A new online tool is designed to track disease outbreaks and epidemics. “Microreact is a cloud-based system that combines the power of open data and the web, to provide real-time global data sharing and visualisation, allowing anyone to explore and examine outbreak information with unprecedented speed and detail. This is becoming increasingly important in the race to monitor and control fast-developing outbreaks like Ebola or Zika, or the growing threat of anti-microbial resistance. Microreact allows data and metadata sets to be uploaded via a web browser, which can then be visualised, shared and published in a research paper via a permanent web link.”