I have been with TrialMatch for Alzheimer's Association for years and the biggest thing I keep getting a road block. Clinical studies are showing that hereditary Alzheimer's may start as early as 20 years prior diagnosis. With my family history, we are looking at the ripe age of 42 and I am willing to be tested but there is nothing out there. I am going to be 41 and now is the time to start collecting data and seeing where this disease may go.
There has to be an easier way to identify those that sign up for TrialMatch or similar to be heard and what they are willing to volunteer for.
So two things: one there has to be an option in these signups to allow volunteers to add notes and suggestions on what they can do for the name of research.
Secondly, make the data research available. I know that someone is studying a small island of people where they are know for early onset Alzheimer's, and I mean early on like in 40s. That means if the theory is correct, these people are starting the progression of the disease as early as in their 20s.