Use of health data for research and services
The McCusker Foundation raises funds for Alzheimer's disease research. Much of our research requires volunteers to participate in the research project. We also provide services to people who have conceerns with their memory. Our difficulty is being able to link with those who have early symptoms of memory loss or other cognitive issues. They only come to attention after the problem is so severe as to be referred to a ...more »
The McCusker Foundation raises funds for Alzheimer's disease research. Much of our research requires volunteers to participate in the research project. We also provide services to people who have conceerns with their memory.
Our difficulty is being able to link with those who have early symptoms of memory loss or other cognitive issues. They only come to attention after the problem is so severe as to be referred to a Geriatrician or Neurologist.
It would be useful if the data on the proposed electronic health system was available for research purposes whilst still protecting the identity of the individual. Should a research project require to contact indioviduals with a specific condition, the owner of the data base could act as an intermediary and a filter to prevent unnecessary contact and send out brief informaton and allowing the individual to choose whether to participate.
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