APT Webstudy


Accelerating AD Clinical Research


General Questions

Registration should take about 30 minutes. This first visit will ask you to agree/consent to participate, and to complete the Cognitive Function Index(CFI) survey and the Cogstate assessment. Then we would like for you to visit the website every three months(quarterly) to complete the CFI and Cogstate again. These subsequent visits should take 20 minutes or less.

If we notice any changes in your memory and thinking performance, we may invite you to a clinic located closest to you for further evaluation. Based upon this, you may then be matched to an Alzheimer’s clinical trial if you are eligible.

Joining the APT Webstudy does not cost you anything monetarily, nor will you be compensated for joining.

The APT Webstudy is an online memory research tool aimed at accelerating the enrollment into Alzheimer's clinical trials by building a trial-ready cohort of individuals. The APT Webstudy is also what we call an "observational" research study, meaning we look at (or observe) changes over time in measures like memory function. There is no study drug in an observational research study, which is what most people think of when they think of "clinical trials".

The APT Webstudy is a research tool being evaluated to learn whether it can help track early changes in cognitive function in older individuals without clinical impairment at baseline. It is not designed for individuals who have already been diagnosed with Alzheimer's disease.

In order to take the memory assessments, you will need to register separately with two different APT Webstudy accounts, using different email addresses and different Usernames. So, if you and your partner share one email address, one of you will need to create a new one. Hotmail, Gmail, Yahoo, among others allow people to create free email accounts.

The APT Webstudy is a research tool being studied to identify individuals who may be at increased risk of developing Alzheimer’s disease in the future. The medical conditions being collected are those that are thought to be associated with an increased risk of developing Alzheimer’s disease. If one or more of your medical conditions is not listed, it may not be considered a condition that increases the risk of developing Alzheimer’s disease in the future, so you do not need to report it. Should you have concerns about your own medical conditions and/or memory, please consult with your personal physician.

No problem, we’ve got you covered! Once you log into your account, you should see the menu pictured below.

Picture of menu options: My Memory, My Life, Dashboard, About APT

Because we want to track your memory and thinking performance over time, “My Memory” will be where you go every three months (quarterly) to retake both the CFI and the Cogstate assessment. It will tell you the date in which you are next able to take them. We’ll send you an email to remind you when it’s time.

Next, “My Life” is where you will find the answers to some of the personal questions we asked when you registered for the APT Webstudy. If something ever changes, you can make edits here.

“My Dashboard” contains a lot of information. Your CFI and Cogstate scores will be posted here, but you’ll also be able to update your profile, manage your consent to participate, and you can even refer a friend.

Lastly, “About APT” is where you would go to find more information about the APT Webstudy, but also information about Alzheimer’s disease.

There are no medical procedures required for the APT Webstudy itself, as it’s an observational study. The APT Webstudy will be used to identify and refer individuals to Alzheimer’s disease prevention studies.

As part of this online research study, we will be assessing your memory function every three months and will track it over time. If we find that you may be at increased risk for developing Alzheimer’s disease, we will invite you for an in-person evaluation at one of the APT Webstudy network sites that will perform further testing. This testing may include blood tests, brain scans and additional memory assessments. If eligible, you may then be provided the opportunity to enroll in a clinical trial aimed at preventing the cognitive decline associated with Alzheimer's disease.

Each Alzheimer’s disease prevention study will have its own specific requirements and medical procedures. You will always be made fully aware of any required medical procedures when you are asked to join a study and sign that study’s consent form.

Site locations will be located throughout the United States. While we are still working with sites to get them ready to see the APT Webstudy participants that may be invited for in-person visits, we will release site locations as soon as they are available.

The APT Webstudy is a research tool being evaluated to learn whether it can help track early changes in cognitive function in older individuals without clinical impairment at baseline. The change in score over time is thought to be most useful in identifying individuals who may be at increased risk for developing Alzheimer’s disease in the future. You will be contacted if there is significant change in scores over time, in order to be assessed as part of an in-clinic evaluation. The APT Webstudy is not meant to be used to make a medical diagnosis. Should you have any questions or concerns about your own memory, please follow up with your regular physician.

Apologies if the APT Webstudy wasn’t for you. We would hate to see you go, but if you prefer to, you are welcome to stop participation in the APT Webstudy by withdrawing your consent.

You can do this by logging into your APT Webstudy account. From there, you would:

  • Select “My Dashboard” from the menu of choices
  • Select “Manage Consent” on the left side of the screen
  • Select “I no longer agree to participate”. If you select this, you will no longer receive emails from the APT Webstudy.

Please feel free to contact us at any time by email at info@aptwebstudy.org or by phone 1-858-877-3135. Please keep in mind we will respond to inquiries during normal business hours: Monday through Friday, 8am to 5pm Pacific Time USA. And we will do our best to respond within three business days. We are closed all major holidays.


Privacy Concerns

The APT Webstudy Privacy Policy link can be found at the bottom of every page of the website. You will see the word “Privacy”. If you click on the link, you will be taken to the entire Privacy Policy. You can also download a PDF file of the document to print or save it to your computer.

The information you provide through the APT Webstudy is sent to the University of Southern California’s Alzheimer’s Therapeutic Research Institute (ATRI), who is overseeing the APT Webstudy, and is securely stored. There are many different ways we may use your information, but it is important to note that we will never share information that can identify you without your permission.

For example:

  • We may use your information to periodically send you updates about the APT Webstudy or Alzheimer’s disease research.
  • Researchers from ATRI will track your progress and analyze the results of the assessments to see if you qualify for an in-person visit with a clinical trial site in our network. We will use your information to let you know if you qualify.
  • We may use your information to let you know about future Alzheimer’s disease clinical trials for which you may qualify.

If you need more details regarding privacy matters, the Privacy Policy can be found on the website (see answer to FAQ #13).


CFI and Cogstate Questions

The CFI survey is a research tool being evaluated to learn whether it can help track early changes in cognitive function in older individuals without clinical impairment at baseline. The change in CFI score over time is thought to be most useful in identifying individuals who may be at increased risk for developing Alzheimer’s disease in the future. It is not meant to make a medical diagnosis. Should you have any questions or concerns about your memory, please follow up with your regular physician. Here is a link to a published manuscript on the development of this research tool: https://www.ncbi.nlm.nih.gov/pubmed/25706191.

The Cogstate assessment is a research tool being evaluated to learn whether it can help track early changes in cognitive function in older individuals without clinical impairment at baseline. The change in Cogstate score over time is thought to be most useful in identifying individuals who may be at increased risk for developing Alzheimer’s disease in the future. It is not meant to make a medical diagnosis. Should you have any questions or concerns about your memory, please follow up with your regular physician. Here is a link to a published manuscript in the development of this research tool: https://www.ncbi.nlm.nih.gov/pubmed/27589532.

Yes, it is very important that the same device be used each time you log back in and retake the assessments for the APT Webstudy. This is to ensure that any changes in performance are indicative of genuine change and not simply a result of devices potentially having different processing times.

The testing needs to be completed online using a browser, therefore you will need to be connected to the internet for the duration of both assessments and for the data to upload at the end of them. If your internet connection drops, try to reconnect to it without closing your browser. If you get to the end of an assessment and realize your connection has been lost, try to reconnect, and re-launch it.

You can use any computer or tablet, as long as its connected to the internet and meets the minimum capabilities requirements below:

  • Memory 2gb RAM
  • 1024x768 screen resolution
  • Sound capability

The Cogstate must be taken on a device that meets certain minimum capabilities, including screen resolution. This is so that the test is displayed and runs properly. If you are getting a message saying that your device doesn’t meet the minimum screen resolution of 1024x768, you will need to try to change the display screen resolution. As the solution to change this depends on your type of device, we can provide resources for Apple Macs and Microsoft Windows:

Windows
https://support.microsoft.com/en-us/help/14108/windows-7-change-screen-resolution

Macs
https://support.apple.com/kb/PH25175?locale=en_US

There might be two issues here. First make sure that the web screen/window you are working on is maximized to its fullest. If it's not maximized, the system may still think you are using a small device like your phone. You can maximize screens by selecting the "box/square" looking thing to the left of the "X" in the top right corner of your window like below:

Picture of how icon to maximize screen size.

If using a tablet, make sure you're holding it in landscape mode.

Another issue here is the size of the screen font. If the screen is zoomed in too far, so that your font size is large, the system may still think you are using a small device like your phone. Try zooming out of your screen a little to reduce the font size.

For now, the Cogstate can only be taken using tablets (in landscape mode) or computers (laptops or desktops). All other activities in the APT Webstudy can be done using your smart phone.

If you close the browser before you complete either assessment, it will not be saved. You will need to restart again from the beginning. You should be able to go back in to restart an assessment after logging back into your account and going to the “My Memory” section of the Home Menu.

Yes, a person with color blindness should be able to complete the Cogstate assessment without difficulty. The colors of the cards used in the test have been intentionally selected to facilitate as much contrast as possible across the various forms of color blindness.

Make sure to watch the Cogstate tutorial video found on the Cogstate introductory page. This will help guide you through the Cogstate assessment. Also as a guide through each of the Cogstate sections, you will be presented with an introduction to each, will be allowed a short practice round, and then will be taken to the actual scored assessments.

Cogstate scores will be processed within about a week of completing the assessment. You will be able to find both your CFI and Cogstate scores under “My Dashboard” once you sign into your APT Webstudy account.

The CFI survey is a research tool being evaluated to learn whether it can help track early changes in cognitive function in older individuals without clinical impairment at baseline. The change in CFI score over time is thought to be most useful in identifying individuals who may be at increased risk for developing Alzheimer's in the future. Here is a link to a published manuscript on the development of this research tool: https://www.ncbi.nlm.nih.gov/pubmed/25706191. The CFI scores range from 0 to 15. An increasing score over time may indicate a decline in subjective cognitive function.

The Cogstate assessment is also a research tool being evaluated for its ability to predict individuals at risk for developing Alzheimer's in the future- the change in Cogstate score over time is thought to be most useful in identifying someone who may be at risk for developing Alzheimer's in the future. Here is a link to a published manuscript on the development of this research tool: https://www.ncbi.nlm.nih.gov/pubmed/27589532. If your Cogstate score falls between -10 to +10, it is considered normal.

**Please note that a single CFI and/or Cogstate score at any given time is not thought to have as much clinical meaning as a change in score over time. As you progress in the APT Webstudy, we will be able to track changes which we believe will be more useful in predicting individuals at increased risk for developing Alzheimer’s disease. A change in score over time is thought to have a predictive value that would be confirmed by in-clinic evaluation. Of course, should you have concerns about your memory, you should consult with your personal physician.**

The goal of the APT Webstudy is to track a person’s memory and thinking performance overtime. While we can’t delete any of your tests, one bad score will not completely skew your overall status that we see. We’ll be looking at all of your scores, so we’ll notice if one just doesn’t seem right especially if it was your first time taking the assessments.