Helping children, together
Genomes in Need is an online community that unites the world towards a common goal:
The analysis of genomes from children with a severe, undiagnosed illness who need help most urgently.
When a child with an undiagnosed illness has his or her genome sequenced and analyzed, there is about a 30% chance that the doctor’s will be able to use that information to make a diagnosis. While this statistic is encouraging, it also means that 70% of children who have their genome sequenced remain undiagnosed.
The goal of Genomes in Need is to provide hope to the 70%. Because genetic analysis is a rapidly evolving science, the initial analysis of a child’s genetic data may have missed the cause. Instead of analyzing the data once and then locking it up on a computer hard drive in a laboratory (as is currently done), Genomes in Need anonymizes the data and makes it publically available.
This allows researchers, bioinformatics experts and citizen scientists to be able to access and analyze the child’s genetic data. Genomes in Need includes online discussion forums for each child so that those working on analyzing the genome can share ideas and work together.
While the concept of crowdsourcing has become a powerful tool on the internet, Genomes in Need is the first time crowdsourcing has been used to leverage the combined brainpower of the world to help decipher the genomes of children that have an undiagnosed illness.
For each genome in need, the genetic data (usually consisting of three genomes: the child and the child’s parents) as well as additional helpful files (such as blood tests and medical reports) are made available to the public via Sequencing.com’s Altruist Endeavor. While the genetic data can be downloaded to a person’s computer, the data can also be analyzed using the apps available at Sequencing.com.
Each genome in need also includes a collaboration forum (discussion group) so that anyone can share, discuss and verify potential discoveries.
All data and information, including medical reports, are de-identified so that the child and the family remain anonymous.
Participating in Genomes in Need is entirely free. All information and knowledge contributed to Genomes In Need are open source and publically available to all.
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