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Participation in research studies

Fellowship for kindred spirits.
sndperkins
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Participation in research studies

Postby sndperkins » Mon May 20, 2019 7:59 pm

Hi, there!

I just got my results today. I am e3/e4. I wasn't surprised. My dad is 68 and has had dementia for two to three years. My sister tested herself and then my parents tested. Interestingly enough, my parents and I did Ancestry tests. After putting all our raw DNA into Promethease.com I realized my parents had results for one allele which was e3 and I had the other allele which was e3, so I had to be fine, right? Once my sister's test came back e3/e4 I knew there had to be a mistake with Ancestry. Word to the wise...

My strongest reason behind being tested was that I want to be involved in research. I'm 39 years old and I think this puts me in a prime place to be used for great research. However, I'm having trouble finding studies to participate in. Can anyone direct me?

Interesting side note since I'm already posting...in 2016 and 2017 I had qEEGs performed as part of neurofeedback I was trying for help with anxiety. Both times my posterior dominant rhythm (processing speed) came back as that of someone with Alzheimer's. Like, lower than 8-year-olds process. Anyone have any info about this and whether it could mean I'm already on a slippery slope or who I could see to find out more?

Thanks, y'all!

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Davida
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Re: Participation in research studies

Postby Davida » Tue May 21, 2019 12:01 pm

sndperkins wrote:Hi, there!

I just got my results today. I am e3/e4. I wasn't surprised. My dad is 68 and has had dementia for two to three years. My sister tested herself and then my parents tested. Interestingly enough, my parents and I did Ancestry tests. After putting all our raw DNA into Promethease.com I realized my parents had results for one allele which was e3 and I had the other allele which was e3, so I had to be fine, right? Once my sister's test came back e3/e4 I knew there had to be a mistake with Ancestry. Word to the wise...



Hi sndperkins!

Welcome to the Apoe4 community. I'm glad you posted. I think you will find this to be a very thoughtful, caring and informative group of people. One that can offer assistance and support as one learns of their status and sometimes confusion surrounding that. Sorry you had that experience. I'm also sorry to hear of your dad's journey.

We encourage new members to read the Welcome Page for an introduction then dive into Primer. It was written by a member physician who carries two copies of the Apoe4 allele. It provides information on the science behind the gene plus tips on lifestyle choices and prevention strategies.

I commend you for pursuing your own brain mapping and being curious and willing to participate in further research. There is so much that we can do for ourselves and loved ones. You are at a fine young age to make effective changes too. Another useful resource is "Tricks and Tips". Here you can search for topics of interest to you and be notified of any post on that topic. For example, research studies to participate in. Checking with local universities and health organizations in your area may be helpful also. Other senior members and contributors will possibly offer their knowledge as well.

Hope this helps. Please continue to post and keep us informed and don't hesitate if more questions arise.

All the best, I'm glad you are here!

Davida
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Reversing Cognitive Decline for Coaches Certification 2018

sndperkins
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Re: Participation in research studies

Postby sndperkins » Wed May 22, 2019 12:12 pm

Thank you, Davida!

NF52
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Re: Participation in research studies

Postby NF52 » Thu May 23, 2019 8:16 am

sndperkins wrote:...I just got my results today. I am e3/e4. I wasn't surprised. My dad is 68 and has had dementia for two to three years. ...My strongest reason behind being tested was that I want to be involved in research. I'm 39 years old and I think this puts me in a prime place to be used for great research. However, I'm having trouble finding studies to participate in. Can anyone direct me?

Interesting side note since I'm already posting...in 2016 and 2017 I had qEEGs performed as part of neurofeedback I was trying for help with anxiety. Both times my posterior dominant rhythm (processing speed) came back as that of someone with Alzheimer's. Like, lower than 8-year-olds process. Anyone have any info about this and whether it could mean I'm already on a slippery slope or who I could see to find out more? Thanks, y'all!
Welcome, sndperkins, from someone close to your dad's age (I'm 67 and ApoE 4/4) who is involved in a clinical research study (Generations 1). It's a tribute to your love of your dad and your pragmatic and generous nature that at 39 you are looking to be part of the solution to this complex disease.

So here's some info for you:

First, clinical trials of proposed drugs vs. placebos, or imaging and biomarker studies of brains and blood, are almost exclusively designed for people 60-75, or sometimes 55-85. The reason for that is because Mild Cognitive Impairment and Alzheimer's or other dementias (vascular, mixed, Lewy Body, etc.) all take years to develop, but typically do so after age 65. So the studies last 5-8 years to find what one researcher called "the sweet spot" of prevention vs. risk!

The good news for you is that "observational" studies of people with ApoE 3/4 and others at your age are going on. Scientists are still trying to figure out if there are likely indicators of increased risk (not guarantees of risk, but something that would allow a personalized medical approach of "this is someone we should watch") or even an ApoE4 "phenotype"--for example, some studies suggest that ApoE 4 results in higher executive functioning (planning, organizing, reflecting, task analysis, etc--even anxiety perhaps from all that analyzing!) as young as the 20's. That's why ApoE 3/4 is far from all-bad news!

In addition, following people in a typical population for potentially decades, like the Framingham Heart Study or the Nurses Study, or the Religious Orders study, often turn up remarkable observations about how resilient and resistant to damage our brains can be. (Those nuns often lived into their 90's with intact cognition, even though their donated brains later showed significant amyloid.)

Here is a source with several observational studies you may want to check out: End Alz. Now: FInd A Study [Note that # 3 and # 4 are both for the Brain Health Registry of UCSF, apparently an oversight.]

Another source is the National Institute of Health's Clinical Trials website, which has an advanced search function that can sort by topic, your age, recruiting studies and your location (Country, State, City) Here is a search I just did for healthy volunteers age 39 in observational studies in the U.S.. Clinical Trials: Alzheimer's Prevention

I hope you and your family are also considering support from your local Office of the Aging and Alzheimer's Association, including considering how best to support your dad's enjoyment of experiences while keeping him safe and making everyday responsibilities as easy as possible. (Hint: Online banking is a great thing, if your parents haven't discovered it yet. And letting you possible serve as a durable Power of Attorney can help a great deal when dealing with car insurance, banks, and myriad other bureaucracies.

Hugs from your dad's genetic "cousin".
4/4 and still an optimist!

sndperkins
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Re: Participation in research studies

Postby sndperkins » Tue May 28, 2019 8:04 pm

NF52 wrote:
sndperkins wrote:...I just got my results today. I am e3/e4. I wasn't surprised. My dad is 68 and has had dementia for two to three years. ...My strongest reason behind being tested was that I want to be involved in research. I'm 39 years old and I think this puts me in a prime place to be used for great research. However, I'm having trouble finding studies to participate in. Can anyone direct me?

Interesting side note since I'm already posting...in 2016 and 2017 I had qEEGs performed as part of neurofeedback I was trying for help with anxiety. Both times my posterior dominant rhythm (processing speed) came back as that of someone with Alzheimer's. Like, lower than 8-year-olds process. Anyone have any info about this and whether it could mean I'm already on a slippery slope or who I could see to find out more? Thanks, y'all!
Welcome, sndperkins, from someone close to your dad's age (I'm 67 and ApoE 4/4) who is involved in a clinical research study (Generations 1). It's a tribute to your love of your dad and your pragmatic and generous nature that at 39 you are looking to be part of the solution to this complex disease.

So here's some info for you:

First, clinical trials of proposed drugs vs. placebos, or imaging and biomarker studies of brains and blood, are almost exclusively designed for people 60-75, or sometimes 55-85. The reason for that is because Mild Cognitive Impairment and Alzheimer's or other dementias (vascular, mixed, Lewy Body, etc.) all take years to develop, but typically do so after age 65. So the studies last 5-8 years to find what one researcher called "the sweet spot" of prevention vs. risk!

The good news for you is that "observational" studies of people with ApoE 3/4 and others at your age are going on. Scientists are still trying to figure out if there are likely indicators of increased risk (not guarantees of risk, but something that would allow a personalized medical approach of "this is someone we should watch") or even an ApoE4 "phenotype"--for example, some studies suggest that ApoE 4 results in higher executive functioning (planning, organizing, reflecting, task analysis, etc--even anxiety perhaps from all that analyzing!) as young as the 20's. That's why ApoE 3/4 is far from all-bad news!

In addition, following people in a typical population for potentially decades, like the Framingham Heart Study or the Nurses Study, or the Religious Orders study, often turn up remarkable observations about how resilient and resistant to damage our brains can be. (Those nuns often lived into their 90's with intact cognition, even though their donated brains later showed significant amyloid.)

Here is a source with several observational studies you may want to check out: End Alz. Now: FInd A Study [Note that # 3 and # 4 are both for the Brain Health Registry of UCSF, apparently an oversight.]

Another source is the National Institute of Health's Clinical Trials website, which has an advanced search function that can sort by topic, your age, recruiting studies and your location (Country, State, City) Here is a search I just did for healthy volunteers age 39 in observational studies in the U.S.. Clinical Trials: Alzheimer's Prevention

I hope you and your family are also considering support from your local Office of the Aging and Alzheimer's Association, including considering how best to support your dad's enjoyment of experiences while keeping him safe and making everyday responsibilities as easy as possible. (Hint: Online banking is a great thing, if your parents haven't discovered it yet. And letting you possible serve as a durable Power of Attorney can help a great deal when dealing with car insurance, banks, and myriad other bureaucracies.

Hugs from your dad's genetic "cousin".



You've been a wonderful help and I appreciate it so much. I have started a profile with the Brain Health Registry and completed all the initial stuff. Again, thank you. What do you mean by "considering support from the local office? What do they do?

NF52
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Re: Participation in research studies

Postby NF52 » Wed May 29, 2019 6:57 am

sndperkins wrote:You've been a wonderful help and I appreciate it so much. I have started a profile with the Brain Health Registry and completed all the initial stuff. Again, thank you. What do you mean by "considering support from the local office? What do they do?
Hi again!

Great question, although the answer is "it depends on your area". In general, however, each state has an Office of the Aging as well as multi-county regions, county-wide or city-wide areas within states. They usually have several goals, including supporting healthy aging and independent living through resources as varied as programs to prevent falls, programs to support economic safety and prevent elder abuse, support for caregivers, programs for respite and day services for people with disabilities or dementia, meals on wheels, etc. Often they can help relatives and caregivers with answering "how to" questions, and provide trained advocates at times for people having difficulty working through systems issues. Your family may not need any of these services, but it always helps to have more resources to plan that you currently need.

Here are some examples at the national, state and regional level:

National Association of Area Agencies on Aging

This next link is a terrific example of how Massachusetts is seeking to promote not only "Age-Friendly Communities", but Dementia-Friendly Communities" with programs such as Memory Cafes that meet in museums and community centers. (Here's a one-minute video about those: Memory Cafe PSA)
Massachusetts Councils on Aging:Dementia Friendly America: Examples of DF Programs and Services

Minnesota Board on Aging is an example of a site that offers information on Living Wills, Advance Care Directives, Durable Power of Attorney for Health Care, as well as a "Live Well at Home" online questionnaire that seeks to increase older residents' ability to recognize and address areas that may affect their ability to age-in-place: http://www.mnlivewellathome.org/

Phoenix, AZ Area One Agency on Aging offers Healthy Living classes on topics such as meal preparation, fall prevention and understanding your prescriptions, as well as a 24-hour help line, legal aid, assistance with care transitions, support for caregivers, and resources for elder hoarders, as well as support to Spanish language speakers and Native Indian peoples.

So while your parents may not need these services, it can be helpful to learn about what's in their area, and even to advocate for something you see elsewhere that might give your dad some chances to get out and enjoy his community. Best wishes, and congratulations on joining the Brain Registry!
4/4 and still an optimist!

sndperkins
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Re: Participation in research studies

Postby sndperkins » Wed May 29, 2019 7:24 am

NF52 wrote:
sndperkins wrote:You've been a wonderful help and I appreciate it so much. I have started a profile with the Brain Health Registry and completed all the initial stuff. Again, thank you. What do you mean by "considering support from the local office? What do they do?
Hi again!

Great question, although the answer is "it depends on your area". In general, however, each state has an Office of the Aging as well as multi-county regions, county-wide or city-wide areas within states. They usually have several goals, including supporting healthy aging and independent living through resources as varied as programs to prevent falls, programs to support economic safety and prevent elder abuse, support for caregivers, programs for respite and day services for people with disabilities or dementia, meals on wheels, etc. Often they can help relatives and caregivers with answering "how to" questions, and provide trained advocates at times for people having difficulty working through systems issues. Your family may not need any of these services, but it always helps to have more resources to plan that you currently need.

Here are some examples at the national, state and regional level:

National Association of Area Agencies on Aging

This next link is a terrific example of how Massachusetts is seeking to promote not only "Age-Friendly Communities", but Dementia-Friendly Communities" with programs such as Memory Cafes that meet in museums and community centers. (Here's a one-minute video about those: Memory Cafe PSA)
Massachusetts Councils on Aging:Dementia Friendly America: Examples of DF Programs and Services

Minnesota Board on Aging is an example of a site that offers information on Living Wills, Advance Care Directives, Durable Power of Attorney for Health Care, as well as a "Live Well at Home" online questionnaire that seeks to increase older residents' ability to recognize and address areas that may affect their ability to age-in-place: http://www.mnlivewellathome.org/

Phoenix, AZ Area One Agency on Aging offers Healthy Living classes on topics such as meal preparation, fall prevention and understanding your prescriptions, as well as a 24-hour help line, legal aid, assistance with care transitions, support for caregivers, and resources for elder hoarders, as well as support to Spanish language speakers and Native Indian peoples.

So while your parents may not need these services, it can be helpful to learn about what's in their area, and even to advocate for something you see elsewhere that might give your dad some chances to get out and enjoy his community. Best wishes, and congratulations on joining the Brain Registry!


Thank you, yet again, for these amazing resources and helpful response. I live about 14 hours away so it's hard to assess their needs myself, but it is great to check these out, see what I think they could benefit from, and pass it along to my parents. Thank you.


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