ggouty wrote:Hi I would be interested in the study, depending on cost. I am a 3/4 and my son is a 4/4. Just recently had lipid biomarkers that made my MD very concerned. I do have limited funds now but would be interested if I could work it out.
Welcome! I just wanted to add to Michele's warm and informative welcome that this topic started in March of 2018 to determine interest among forum members in a possible trial, but that study does not appear to be happening anytime soon.
The good news is that, as Michele pointed out, we have many forum members who have experience with figuring out how to respond to similarly-concerning biomarkers and develop their own plan of action. Because your son is a 4/4, his other parent must also have a copy of ApoE 4. Together, you can consider how to live lives full of purpose, understanding that research into ApoE4 is expanding greatly, and the means to manage risk is likely to be much better understood in the near future.
Depending on what age you are, you may want to consider other, free studies for participation. Some are "observational" trials, looking at online or in-person data from thousands of people to learn more about healthy aging and better identify which indicators of change may be most important to track. Some of those may share information with participants; others may share some, but not all. More and more, study sponsors are realizing that people want to be active participants and gain as much information as possible while participating in a trial, so expect to find more, rather than less information as new trials begin.
Here are some that might be of interest to you:
The
All of Us Research Program is sponsored by the National Institute of Health:
All of Us is
inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This could help them develop better treatments and ways to prevent different diseases.
The Alzheimer's Association spends millions each year to support research on prevention and treatment of AD, and has a Trial Match of studies that include non-drug trials. You can read more here:
Trial Match
The Alzheimer's Clinical Trial Consortium (ACTC) is a network of dozens of academic research centers collaborating to accelerate research, with funding from the National Institute on Aging (NIA/NIH). They have an online Alzheimer's Prevention Trial web study called for people who are 50 years or older. You can find information about it here:
APT Webstudy Welcome (Full disclosure: I am on the Research Participant Advisory Board for the ACTC, although I am not in any ACTC-sponsored clinical trial.)
To search for clinical trials (large and small) by your region, try the advanced search function on the NIH Clinical Trials website. Each trial has detailed information about its purpose, the criteria to join and contacts for study sites.
Clinical Trials.gov
Enjoy learning more about clinical trials and thank you again for joining our community!