Participated in a study

allit

We participated in this study today. My wife, who has MCI with Azlheimer's pathology, is very interested in participating in research and signed up for a couple of non-drug related opportunities. We both participated in this one. Pretty cool and easy and we earned some money for it too.

Qualitative Analysis of the Content Validity and Usability of the Virtual Reality Functional CapacityAssessment Tool-Short List (VRFCAT-SLx) in Older Adults on the Alzheimer’s Continuum with MildCognitive Impairment

Is anyone else participating as volunteers for research projects?

M1

That's quite a mouthful. Not sure what it means. Glad you felt it was worthwhile though. We considered some studies but other health problems prohibited for the most part, and her internet waned as she progressed.

Iris L.

What did she have to do? I was refused for most clinical trials because I don’t have a caregiver.

Iris

allit

https://alzconnected.org/discussion/comment/220016#Comment_220016

Here's the summary. They are looking for people who are local to our area in Durham NC because you have to use a tablet to test out a virtual program that's kind of like a video game. I don't think you need a caregiver for it, but you need someone who knows you pretty well who can go with you and provide some information.

CONCISE SUMMARY

Researchers who are studying Alzheimer’s disease would like to come up with a way of detecting initial symptoms, such as mild cognitive impairment. Deficits in activities of daily living are well documented in persons with mild cognitive impairment. Reliable detection of these often subtle changes remains a challenge for researchers. The purpose of this research study is to learn about whether a computer-based test called the Virtual Reality Functional Capacity Assessment ToolShort List (VRFCAT-SLx) accurately reflects the activities that are important for everyday functioning, and to establish how understandable and easy to use the VRFCAT-SLx is for people who have mild cognitive impairment. All participants will be between 55 and 85 years of age, experience mild cognitive impairment, and have a recent Aβ CSF biomarker test.

Iris L.

One of the first signs that I point out and noticed in myself is difficulty in paying bills and handling financial matters. This came before significant memory loss and speech problems. Family members and other people can look for this.

The majority of PWDs have anosognosia, so I don't know how reliable their self reporting would be.

Iris

jfkoc

Interesting. Who gave the test and how were the results used?

allit

https://alzconnected.org/discussion/comment/220082#Comment_220082

A young woman asked questions. I actually don’t know what her credentials were. There were also other people involved who gave instructions on how to use the computer pad.

I think they want to use the results to develop a computer program (maybe eventually AI) to be what administers cognitive tests vs a human being. I suppose by using a program like that, it cuts down on subjectively scoring someone’s cognitive level. And could probably be administered in many more settings where a neurologist doesn’t have to be involved.

Oh and I just remembered, they want to be able to use it when they are doing research so that there’s more researchers using the same tool. Then different studies using the same tool can be compared and analyzed to get better conclusions.

Iris L.

My neurologist tests me via a computer cognitive test about every two years or so. I used a new software program this year, the prior software was called Neurotrax.

Iris

jfkoc

Who sponsored the trial? How were you approached?

I ask because there are a lot of scams right now.

allit

https://alzconnected.org/discussion/comment/220185#Comment_220185

I’ll see if I can find specific info for you but we went to the neuro center at Duke in Durham NC for this one. This one is legit.

HollyBerry

We've done quite a few studies, first with the ADRC (Alz Disease Research Center) on campus and then several others from major universities and ADRC's elsewhere. Some have been really fun and one of them even paid pretty well! A legitimate research university will send copious amounts of information about their research program and human subjects protection.

allit

https://alzconnected.org/discussion/comment/220213#Comment_220213

My wife is also doing the one with ADRC!

And she’s sent an inquiry about this one too with Duke

https://www.dukehealth.org/clinical-trials/directory/pro00111831

jfkoc

I hoped it was through Duke.