The ALOIS Community: carers and the public decoding Alzheimer’s disease

On Tuesday I tweeted from the invoNET workshop I was Chairing, about some of the fabulous studies of public involvement in research being showcased during the day.  I highly recommend you visit the website invoNET to discover more about – and join – the burgeoning evidence and community in this field.

As is typical on such days, you also stumble across some really great initiatives that are not being presented formally on the day and you think: ‘how come I never knew about that until now?’

The ALOIS Community is, very simply, an online community of carers and volunteers that helps with the ongoing development of a comprehensive register of dementia research studies which is part of the Cochrane Collaboration.  The register is managed by the Cochrane Dementia and Cognitive Improvement Group.  Essentially, it’s an open access register of trials and other studies which researchers and patients and carers can use.  Carers and volunteers are involved in such things as coding research studies for putting on the register and commenting on trial reports.

Really worth a look and, if you are interested, in volunteering perhaps.

PS: For once Alois is not an acronym.  Alois Alzheimer was the German doctor who first diagnosed Alzheimer’s disease in about 1907.

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