APT Webstudy


Accelerating AD Clinical Research


General Questions

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 overtime 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".

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

Please feel free to contact us 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.


Participation

Registration should take about 30 minutes. This first visit will ask you to agree/consent to participate, and to complete both 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 overtime, 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 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 dementia.

Yes! We invite people all over the world to join if they would like to! Please just keep in mind that all clinical sites will be located in the United States. These sites are part of the APT Webstudy to conduct further evaluation of those participants invited to in-person visits. If this isn't a deal breaker for you, please join us! You will still have access to everything in the APT Webstudy, including your scores from the assessments you take. Attending any in-person clinic visits someone may be invited to is not a requirement to be part of the APT Webstudy. If you end up choosing to join, note that the zip code field at registration is not required so you may skip this question.

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. Although there are many risk factors for Alzheimer's disease, we are first focusing on the three listed for the purposes of the APT Webstudy. We may be adding other conditions in the future, however, as we analyze the data from what is being gathered from the current algorithm. 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 ever 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 are registered and have completed one full round of assessments, you should see the menu pictured below whenever you log into your account on any subsequent visits.

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 survey 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.

Next, "About APT" is where you would go to find more information about the APT Webstudy, but also information about Alzheimer's disease.

Lastly, the top right of the screen contains useful resources and information. You'll see easy access to our Frequently Asked Questions (FAQs), as well as a blue icon with a person in it. This will tell you who you are signed-in as (your Username), as well as take you to your "Profile" and to Account Settings which is where you can change the email associated with your account and/or your password, and other actions.

There are no medical procedures required for the APT Webstudy itself, as it's a web-based 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 may invite you for an in-person evaluation at one of the APT Webstudy network sites that will perform further testing to confirm if there is increased risk for developing Alzheimer's. 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.

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 may be contacted if we notice a significant change in scores over time, in order to be further assessed as part of an in-clinic evaluation. The APT Webstudy is not meant to be used to make a medical diagnosis. Should you ever have any questions or concerns about your own memory, please follow up with your regular physician.

Apologies if the APT Webstudy isn'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.

If you are in the middle of your first visit, you'll need to navigate back to the consent section by clicking on the yellow thumbs up at the top of the screen (in the navigation plane) as shown below. Then select "Check to revoke my study consent". This will immediately revoke your own consent and you will no longer receive emails from the APT Webstudy.

Picture of walkthrough: targeting navigation to consent view


Technical Issues

Passwords for the APT Webstudy must contain at least one number and at least one uppercase character.

The best way to retrieve a forgotten Username or password is to navigate to the "Log In" page (https://www.aptwebstudy.org/accounts/login/). Here, you should see a "Forgot Password or Username?" option, as shown on the screen below. Click on that and it will take you to a page that will ask for you to enter the email address you used to register for the APT Webstudy. We will send you an email containing your Username, as well as an option to reset your password.

Picture of Login Page: Forgot Password or Username option

Please sign in to your APT Webstudy account using the original email address used to register for the APT Webstudy. Then, click on what looks like a tiny person in a blue circle on the top right of the screen. You can then navigate to the "Emails" section on the left-hand side of the screen. Once there, you should see the below screen and should be able to add an email address, remove one, etc.

Picture of Account Settings: Email association

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.

This happens when participants choose to initially register for the APT Webstudy using the "Log in with Google" option at registration as shown below. If you have a Google account, this automatically generates a "weird" Username and connects your APT Webstudy account with your Gmail (Google) email account. Because it's connected to your Google account, it doesn't require you to enter a password- we offer this as a quicker method of registration into the APT Webstudy for people who want to take advantage of it. All you'll need to do is click on that button on any subsequent visits and it will automatically sign you in.

Picture of Sign Up Page


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

The Cogstate consists of four subtests (i.e. Detection, Identification, One Card Learning, One Back). Below is a little more explanation of the subtests:

  • The Detection test: measures processing speed. The on-screen instructions ask: "Has the card turned over?". A playing card is presented face down in the center of the screen. The card flips over so it is face up. As soon as the card flips over the participant should indicate "Yes".
  • The Identification test: measures attention. The on-screen instructions ask: "Is the card red?". A playing card is presented face down in the center of the screen. The card flips over so it is face up. As soon as it flips over the participant must decide whether the card is red or not. If it is red the participant should indicate "Yes", and if it is not red the participant should indicate "No".
  • The One Card Learning test: measures visual memory. The on-screen instructions ask: "Have you seen this card before in this test?". A playing card is presented face up in the center of the screen and the participant must decide whether they have seen the card before in this subtest. If the card has been seen before the participant should indicate "Yes", and if it hasn't been seen before the participant should indicate "No".
  • The One Back test: measures working memory. The on-screen instructions ask: "Is the previous card the same?". A playing card is presented face up in the center of the screen. The participant must decide whether the card is the same as the previous card. If the card is the same the participant should indicate "Yes", and if it is not the same the participant should indicate "No".

Yes, it is important that the same device (i.e. computer, tablet) be used each time you retake the Cogstate assessment 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 following minimum capabilities requirements: 2gb RAM of memory, 1024x768 screen resolution, and sound capability.

The Cogstate assessment 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 think you are using a small device like a 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.

Another issue here might be the size of the screen font. If the screen is zoomed in too far, so that your font size is large, the system may think you are using a small device like a phone. Try zooming out of your screen a little to reduce the font size. If using a tablet, make sure you're holding it in landscape mode.

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 and you will need to restart from the beginning. You should be able to restart an assessment by logging 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. Please see screenshot below of what you should see for the introduction page to Cogstate- the video play button is found on the screen where the finger and keyboard are. 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 assessment. As a quick point though, the tutorial will show that there are keys on your computer keyboard (laptops and desktops) to use to designate "yes" or "no" answers. If you are on a tablet, there will be actual "yes" or "no" buttons on the screen to touch with your fingers.

Picture of Cogstate test.

Cogstate scores will be processed within about a week of completing the assessment, and you will receive notification when your scores are available. 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. Under "My Dashboard" you will see different colors on the Cogstate graph. These indicate individual scores associated with the Cogstate subtests (i.e. Detection, Identification, One Card Learning, One Back). Below is a little more explanation of the Cogstate subtests:

  • The Detection test: measures processing speed. The on-screen instructions ask: "Has the card turned over?". A playing card is presented face down in the center of the screen. The card flips over so it is face up. As soon as the card flips over the participant should indicate "Yes".
  • The Identification test: measures attention. The on-screen instructions ask: "Is the card red?". A playing card is presented face down in the center of the screen. The card flips over so it is face up. As soon as it flips over the participant must decide whether the card is red or not. If it is red the participant should indicate "Yes", and if it is not red the participant should indicate "No".
  • The One Card Learning test: measures visual memory. The on-screen instructions ask: "Have you seen this card before in this test?". A playing card is presented face up in the center of the screen and the participant must decide whether they have seen the card before in this subtest. If the card has been seen before the participant should indicate "Yes", and if it hasn't been seen before the participant should indicate "No".
  • The One Back test: measures working memory. The on-screen instructions ask: "Is the previous card the same?". A playing card is presented face up in the center of the screen. The participant must decide whether the card is the same as the previous card. If the card is the same the participant should indicate "Yes", and if it is not the same the participant should indicate "No".

**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.

First, log in to your APT Webstudy account. You should then see the menu of options as shown below.

Picture of Cogstate test.

Next, navigate to "My Memory", in which you should see something similar to what's shown below. If it's time to take your next set of CFI and/or Cogstate assessments, they will be "unlocked" and you should be able to click on the blue "Take CFI Assessment" or "Take Cogstate Assessment" button(s). If it is not quite time yet, you should see the date of the next availability to retake.

Picture of Cogstate test.


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 that, you will be taken to the entire Privacy Policy. You can also download a PDF file of the document to print or save 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 (USC 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 USC 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.