FAQ for Transitioning to the New myLTFU Portal

What is the new myLTFU Portal?

The new myLTFU Portal is like the old portal, only better! When it launches, it can be accessed as a website, or you can download the app to use it on your phone. The new portal is designed to make your participation in our study easier, more convenient, and more rewarding. We’ll let you know when the new myLTFU Portal is available for you to use!

Why do I need to switch to a new portal?

We are switching to improve your experience. The new myLTFU portal offers enhanced security measures, improved navigation, and additional features designed to make it easier for you to manage your information and complete your surveys. We also want to give you more options to complete your surveys and how you will receive your rewards. All of this is possible in our new myLTFU portal.

What will happen to the old myLTFU Portal?

It will stay online for now as people transition to the new portal, but you won’t need to use it after you have the new and improved portal. Everything you need for the LTFU study moving forward will be in the new myLTFU portal. Eventually, the old portal will be discontinued.

What will happen to my information on the old myLTFU Portal?

We have transferred your information to the new myLTFU Portal. Your information remains secure and protected even through this transition.

I already signed up for the old myLTFU Portal. Can I keep using that?

Unfortunately, no. We will need to discontinue the old myLTFU portal. It’s important that all our active participants switch to the myLTFU portal. We know that learning a new website and creating a new account can be challenging. However, our goal is to continuously improve the LTFU study. We truly believe that the new myLTFU portal will give you a better experience in the LTFU study.

account can be challenging. However, our goal is to continuously improve the LTFU study. We truly believe that the new myLTFU portal will give you a better experience in the LTFU study.

I never signed up for the old myLTFU Portal? Am I able to sign up for the new one?

Yes, you will. Signing up for the new myLTFU Portal does not depend on if you used the old one. Everyone who receives an invite can sign up.

When will I receive my invite to the new myLTFU Portal?

The new myLTFU Portal is coming soon. We anticipate that we will start inviting participants to the portal starting in late February/early March.

How do I sign up for the new myLTFU Portal?

You can sign up by clicking the link in your invite email. More details about the invitation email will come soon!

What information do I need to provide during sign-up?

You’ll need to provide your email address or phone number, create a password, and verify your account using a code that is sent to your email or phone number, depending on which method you used to create your account.

How do I receive invitations for surveys?

Once you’ve signed up, you’ll receive email invitations whenever a new survey is available via email, text, and push notifications if you’ve turned them on for the app.

How will the surveys be easier to complete?

At this time, there are three surveys in total. You can complete them at your own pace over the next 12 months. After the first survey, you will choose if you’d like to continue or be reminder in a week, two weeks, a month, two months, or three months. This way you can take a break between surveys if you’d like.

Can I complete multiple surveys at once, or do I have to wait between surveys?

You can choose to complete all three surveys at once or spread them out over time. It’s entirely up to you.

What rewards will I receive for participating?

You’ll receive a $10 reward for each survey you complete, up to a total of $30.

How do I choose and receive my $10 reward?

After completing a survey, you will receive an email with a link from our reward partner, Tremendous. You will click that link and choose from a list of available options. You can redeem your $10 reward as a digital gift card at dozens of retailers. You can also choose to donate the $10 back to the study or to one of the many available charitable organizations available on the Tremendous website.

Are there different gift card options available?

Yes, you can choose from a variety of popular retailers including Amazon, Target, Walmart, Starbucks, and many more! You’ll be able to scroll through the options available to you or you might think of a retailer and type it in the search bar. We may have it available!

What if I’m having trouble signing up or logging in?

If you’re having trouble, please contact us tollfree at 1-800-775-2167 or email LTFU@stjude.org for assistance.

What should I do if I forget my password?

Click on the “Forgot Password” link on the login page and follow the instructions to reset your password.

What if I experience technical issues while completing a survey?

Please contact our call center at 1-800-775-2167 or email LTFU@stjude.org for help with technical issues.

Is there someone I can contact for help with the new platform?

Yes, the LTFU study team is available to help and answer any questions. Call us at 1-800-775-2167 or email LTFU@stjude.org. If we miss your call, please leave a message. We will get back to you as soon as we can.

How can the LTFU Study Team help me?

The LTFU Study Team can assist with signing up, logging in, accessing surveys, completing surveys, and resolving technical issues.

What is my Electronic Health Record?

Your electronic health record is whatever health information that your doctors, nurses and other care providers have gathered from you and stored in an electronic medical record. There are many types of electronic medical records. You may have more than one depending on if you have been involved with more than one health care system. Each health care system may have their own electronic health record and their own way for you to access it. We ask you to link your account to our study using the technology we have available with our new myLTFU portal.

Why do you want to link to my Electronic Health Record?

We are only able to gather limited information from our surveys. Linking to your electronic health record will help us to enrich our understanding of you and your health journey over the years. It may help us find areas of interest we have overlooked so we may improve our research in the future. It will allow us to collect more detailed data about our participants that comes directly from a medical source.

What information will you receive from my Electronic Health Record?

Examples include information about your health problems, test results, medical procedures, images such as X-rays, and medicines you take. Electronic health records can contain sensitive information. They may contain information about your mental health, genetic conditions, or use of alcohol or drugs. They may show sexual or other infections, including HIV status. This information will be securely stored and never shared without your permission.

How long will you collect information from my Electronic Health Record?

When you link your health record, you decide how long you will share access to your Electronic Health Record with the maximum being one year.  At the end of one year, you can decide if you wish to continue sharing your health information or stop and you can stop sharing at any time.

Will my Electronic Health Record be kept confidential?

Yes, your electronic health record will be kept confidential. It is collected for research purposes only and can only be viewed by approved researchers. Any electronic health information collected for research analysis in a dataset will be deidentified. Your electronic health information will be collected for research purposes only.

Will sharing my Electronic Health Record benefit me in any way? Will you be able to tell me things that my doctor didn’t?

No, electronic health information collected from your electronic health record will be collected for research purposes only. Researchers cannot review your electronic health information and tell you individual information about your health. You will not benefit directly from sharing your health information. However, you will contribute to improving the quality of the LTFU study and help us fully utilize our new technology.

I am ready to share my Electronic Health Record. What should I do?

• You will login to your account on the new myLTFU portal (coming soon).
• You will click start button in a box that says “Share Your Electronic Health Records”
• The following screens will give you more information and will allow you to directly share your electronic health information by linking your healthcare account with your participant account. This will not affect your ability to participate in the research study. 
• If you would like to link your healthcare account, you would click next and follow the instructions on screen to link your account.
• You can add as many healthcare systems as you would like. There will be a list of available healthcare providers for you to choose from.
• Once you choose a provider, a new window will open. In the new window, log into your account using the account credentials from your healthcare provider or insurer. Then allow the myLTFU portal to allow the researchers to access your electronic health record. If your account allows you to see electronic health information about anyone other than you, please share only your electronic health information. For example, if you can see electronic health information about both you and your child, please share only information about you. 
• If your provider isn’t listed, please let the study team know at 1-800-775-2167 or email LTFU@stjude.org. Your provider may be listed soon.

Is my information secure on the new myLTFU portal?

Yes, we take your privacy very seriously. Your data’s safety is our top priority. The new myLTFU portal is built with advanced security protocols to ensure that all personal information remains secure. We follow stringent data-handling practices to protect your data at every step. Your information is encrypted and securely stored.

Who created the new myLTFU Portal?

We have partnered with a health technology company called Vibrent Health to create our new portal. Vibrent is a platform trusted by the National Institute of Health and research teams across the country to engage, educate, and gather data from more than 400,000 research participants. It is a mobile-friendly web application that will allow you to easily complete surveys and other study activities while connecting with your study team seamlessly. You can read more about them here: About Us - Vibrent Health's Mission in Health Research

What is Vibrent’s Privacy Policy for research participants?

You may read their privacy policy here: Privacy Policy - Vibrent

Will my responses be kept confidential?

Yes, all survey responses are confidential and used only for research purposes.

Will you share my data with anyone else?

If you choose to receive your $10 reward in the form of a gift card or donate it outside of the LTFU study, we will need to share your email address with our reward partner, Tremendous. They will need this to process your reward in the method of your choosing.

We may need to share data for reporting purposes with committees who oversee research and make sure that it is being conducted ethically and properly. We may share data with other researchers who have been vetted and approved to keep all data shared confidential.

Do I need to do anything if I was using the old myLTFU portal?

Yes, you’ll need to sign up for the new portal using the link provided. After that, you do not need to do anything else from the old portal.

Will my progress from the old myLTFU portal carry over?

We have concluded the last survey we asked you to complete on the old portal. Moving forward, all surveys and study activities will use the new portal. This will be a new survey and a new portal so there is no progress needed from the old myLTFU portal.

When does the transition to the new platform start and end?

The transition will start in March 2025 and will continue throughout the rest of the year.

What happens if I miss the sign-up deadline?

There is no sign-up deadline. Please sign up as soon as you can after you receive your invitation. We will send you several reminders via email, mail and phone calls.

Do I have to complete all the surveys?

No, participation is voluntary. However, the more surveys you complete, the more $10 rewards you can earn and the more powerful the study becomes to help survivors.

What if I want to leave the LTFU study?

You can leave the LTFU study at any time by contacting us at 1-800-775-2167 or LTFU@stjude.org. This will not affect any future care or relationship with any of your health care providers.

Who can I contact for more information?

For more information, please contact our call center at 1-800-775-2167 or email us at LTFU@stjude.org.