It seems that there has been a lot of research leading to good prevention strategies for those at risk for Alzheimer's. why isn't something similar being done for frontotemporal lobe dementia (ftd)? i would love to set up a site where i could collect and disseminate info on prevention strategies for ftd- but i have found absolutely zero information to disseminate. this is what i posted on a board of mostly caregivers of people with ftd:
"I think people on this board who are interested can discuss ways to possibly prevent the illness (this statement was in response to a caregiver who thought we should not focus on prevention when just taking care of people with ftd was overwhelming in and of itself). tons of research is going on in that vein for people with the apoe4 risk allele, but i see nothing happening for those at risk for ftd. i am already having cognitive decline- so it's not just some intellectual exercise i am engaging in. i appreciate all the family members who are giving their experience because i see nothing coming from the scientific community on prevention of ftd."
if anyone has access to dr bredesen or other researchers, could you ask them for any leads or research to prevent ftd? medications that will work for behavioral issues in alzheimer's patients are often contraindicated for those with ftd. we can't just use alzheimer's research and apply it to those with a genetic predisposition to ftd.
can those in contact with dr bredesen ask why there is no research being done on the prevention of ftd?
-
progranulindefect
- Contributor
- Posts: 142
- Joined: Sat Jun 25, 2016 8:26 pm
Re: can those in contact with dr bredesen ask why there is no research being done on the prevention of ftd?
Hi "Pro",
I'm sorry that you've had no luck with finding information on prevention trials for FTD. Here is a link to Clinical Trials.gov, a site that shows both U.S and other countries' clinical trials related to FTD. Many of these studies have been completed; others appear to be interventions for patients with FTD. But it may give you a sense of where the field is, and of researchers who are working on prevention, or identification of those at risk of FTD.
https://clinicaltrials.gov/ct2/results? ... ch=Search
The behavioral challenge of FTD research may be different than in Alzheimer's research. A 2016 abstract explains that a 12 month clinical trial started in 2013 at 76 sites in 15 countries to see if something called methythioninium would help patients with diagnosed FTD. Of 275 people pre-screened, only 20 progressed to a randomized trial (way too small a number to be meaningful). Reasons included an age greater than 70 (they were changing the age limit to 80), medical conditions that could affect results, distance from the test sites, a mental status age too low for the study, and behavioral disinterest or refusal to participate, or difficulty tolerating repeated MRIs and study visits and procedures.
[/url]http://aanddjournal.net/cms/attachment/ ... 2/20524242[/url]58/main.pdf.png
The good news from the Clinical Trials website is that basic science, the use of well-designed international trials to reach a significant number of people and the focus on identifying prevention targets is still proceeding at many research sites.
I'm sorry that you've had no luck with finding information on prevention trials for FTD. Here is a link to Clinical Trials.gov, a site that shows both U.S and other countries' clinical trials related to FTD. Many of these studies have been completed; others appear to be interventions for patients with FTD. But it may give you a sense of where the field is, and of researchers who are working on prevention, or identification of those at risk of FTD.
https://clinicaltrials.gov/ct2/results? ... ch=Search
The behavioral challenge of FTD research may be different than in Alzheimer's research. A 2016 abstract explains that a 12 month clinical trial started in 2013 at 76 sites in 15 countries to see if something called methythioninium would help patients with diagnosed FTD. Of 275 people pre-screened, only 20 progressed to a randomized trial (way too small a number to be meaningful). Reasons included an age greater than 70 (they were changing the age limit to 80), medical conditions that could affect results, distance from the test sites, a mental status age too low for the study, and behavioral disinterest or refusal to participate, or difficulty tolerating repeated MRIs and study visits and procedures.
[/url]http://aanddjournal.net/cms/attachment/ ... 2/20524242[/url]58/main.pdf.png
The good news from the Clinical Trials website is that basic science, the use of well-designed international trials to reach a significant number of people and the focus on identifying prevention targets is still proceeding at many research sites.
4/4 and still an optimist!
