I was listening to a program this morning on NPR regarding the new government report (national plan) that is being put together on AD. They mentioned that there aren't enough healthy people volunteering for the research studies (i.e., studies that involve MRI's and PET scans, spinal fluid taps, etc.). I am thinking that this is something I may want to do "after" to try to help find new treatments, etc. I was wondering if anyone here has been a part of a study, or whether any adult children have. Since they are hoping to find changes in the brain decades before symptoms show up, to identify biomarkers for the disease, I would think that adult children would be extremely valuable in research studies. Many are unable to help the caregivers during our years of active caregiving (or have chosen not to), but this is a way they could contribute.
To clarify--I'm not referring to the people with dementia, I know that my husband and many others have taken part in clinical trials for medications.
Studies - Errrrrr. . . . . . Sore point with me . . . .
Shortly after Dx (at age 57) I TRIED to get my wife into some sort of study!! The nurse/scientist in me felt it was an obligation.
I went to the research pages (linked through the ALZ Assoc) and found a nice study that would follow AD people (and their partners) by doing repeated scans & evaulations to document changes accross time. GREAT IDEA! She was young and in the early stage and I would have gladly sacrificed time from work to participate.
In Los Angeles we went to USC, UCLA/VA (dont have to be a veteran) and Univ CA Irvine as they were all listed as participants in this study. I had read the requirements for the study participants and knew we fit perfectly. We were turned down in all three cases(!)
In one interview they said she was too far along. At the next place a month later they said she was too early and not bad enough (MCI vs AD) at UC Irvine they did not give a real reason. A good study needs randomization. Our walking in 'unannounced' should be a good randomization.
My gut feeling was that they were 'cherry picking' their participants. Most likely to either skew the results or include only those people they already had a clinical relationship with. (none of the places were our primary providers)
Because were were treated this way I have now learned to not believe every study that is released where they made one discovery or another. I suspect they picked their participants in advance also. ;-)
I was thinking about doing that until I ran across a blog of a man (actually a doctor) who volunteered as a healthy control and found out he has MCI. He has continued in the study - just not in the group he thought he'd be in. His blog is here: http://www.organicgreendoctor.com/
As sleep deprived as I am right now, I'm sure I would be put in an impaired group, so I am staying away for now at least. But I think it is a great thing for people to do. The ADNI, as I'm sure you know, does require a spinal, which I think scares some people off...
I would be hesitant to be involved in an "early screening process". Once it was put in your medical record that you have the "markers" or propensity for developing AD, you might as well kiss your future insurability goodbye. Future employment could be at risk................plus, who would want to know they were going to go down this road without a viable treatment anywhere on the horizon?
The type of study I'm referring to would have nothing to do with one's medical records. This would be to establish a baseline that could be followed over a number of years, to determine what the biomarkers are for AD. (I presume these types of studies were done to discover that high cholesterol is a precursor of heart disease, for example.) I'm not sure what an early screening process is (genetic testing?), but that could potentially have the negative impact Sandi* described. I am certain that, especially with HIPPA laws, study information is confidential.
Mary22033--Thanks for the blog--I'll read it. I agree that the spinal fluid part is a downer--that was addressed in the program I heard; the expert compared it to going to the dentist--unpleasant. Not sure if I believe that comparison!