Hi, I'm Martha, with a non-profit looking at glioblastoma (which my friend and colleague has)

Hello & Welcome
#1

My friend and colleague Jessica Morris, living with glioblastoma (GBM), founded a non-profit called OurBrainBank. We gather self-reported health indicators data from people with GBM and their carers.

Currently using a custom app, but looking at ways to make our data more valuable for research and the app/data itself more helpful for the people generating it.

I will start a discussion about GBM data collection, new to this and I don’t have a science background, so appreciate any help.

Had a meeting today with Bastian to introduce me to Open Humans, thank you Bastian!

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#2

Hey @MarthaOurBrainBankfo,
welcome to the Open Humans forum, glad to see you here! I think making the data more useful for the people generating it is a key challenge!

Btw: Our forum isn’t used as much these days as many interactions happen on our Slack instead. You can join it through https://slackin.openhumans.org/ :slight_smile:

Cheers,
Bastian

#3

Good to see another community project starting. We try the same as Cluster Headache community. Its a hard battle. Patient initiatives in research are not very well accepted and we will encounter a lot of the same problems. Is data validated, is it stored in the right place, is outcome of analysis validated etc etc.

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