The ADLD Research Hub: FAQ

The ADLD Research Hub seeks to improve our understanding of ADLD so that we can accelerate the path to a cure for this rare disease. Just as importantly, the ADLD Research Hub will support research to improve care and quality of life for ADLD patients. You also play a role in determining the goals of the ADLD Research Hub: the information you share about your needs and priorities will help us set our research agenda in the months and years to come.

Who operates the ADLD Research Hub?

The ADLD Research Hub is a project of the ADLD Center, operated in partnership with the Luna platform (a public benefit corporation) and Genetic Alliance (a nonprofit organization).

The ADLD Center was founded by members of the ADLD community. We work to support research into various aspects of ADLD and to provide a caring and educational community for patients and their families.

The Luna platform provides the ADLD community with a secure place to gather and store information, where people control how their data is used. Genetic Alliance provides guidance on registry design, and the Genetic Alliance Institutional Review Board provides ethical and regulatory oversight.

How is the ADLD Research Hub funded?

The ADLD Research Hub is funded by the ADLD Center as part of our mission to support research into various aspects of ADLD.

How is the ADLD Research Hub governed?

Scientific oversight for the ADLD Research Hub is provided by the ADLD Center’s scientific and medical advisors, with additional regulatory and ethical oversight provided by the Genetic Alliance Institutional Review Board.

We rely on input from our community members – patients, family members, caregivers, and researchers – to set the research agenda for the ADLD Research Hub.

Joining the ADLD Research Hub

How much time will this take?

We’re asking you to give us an hour or two of your time about 2-3 times per year. We will be adding new research activities over time based on the needs of our community members and research collaborators. For now, we are starting with some very simple activities that will help us understand who are community members are and what they need. You can expect more detailed surveys to launch later this year.

Who can participate?

Any individual who has been diagnosed with ADLD is invited to join the ADLD Research Hub. Individuals diagnosed with ADLD can create their own accounts, or they can have a family member or caregiver create and manage an account for them. Click here for more information about how to sign up as a patient.

Family members and caregivers of individuals diagnosed with ADLD are also invited to enter information about their own experiences in the registry. In order to support you better, we need to know more about your needs! Click here for more information about how to sign up as a patient.

I’ve been diagnosed with ADLD. How do I sign up?

Click this link to create an account for yourself and start entering information about your experience. After you create your account you’ll be asked to complete the Luna platform consent. Once you’ve agreed to the consent you can join the “ADLD Research Hub: Get Started” study.

This first study is open to all registry participants (patients and family members). It has four simple activities that will help us better understand who is participating in the registry and what their needs and priorities are:

Your Experience with ADLD: For Patients. A short survey about patients’ experience with ADLD (as an individual diagnosed with ADLD, you should complete this survey!)
Your Experience With ADLD: For Caregivers and Family Members. A short survey about the family member or caregiver experience with ADLD (as someone diagnosed with ADLD, you do not need to complete this)
A demographics survey.
A request to connect your electronic health records. (Currently only available for participants in the United States.)

We will launch new surveys with more detailed questions about ADLD patients’ experiences later this year. As we learn more about the needs of the ADLD community and work with ADLD researchers to develop new studies, we’ll also continue to launch new activities every few months or so. Your input is a critical part of how the registry grows!

I would like register and enter information on behalf of an ADLD patient. How do I create an account for them?

If you are a family member or caregiver for someone with ADLD, but they cannot enter their own information in the registry, you can register them using the “ward” functionality available in Luna. To get started simply visit this sign-up page, enter your information, and click the “CREATE AN ACCOUNT TO MANAGE A MINOR OR WARD” button. You’ll finish creating your own account to manage the ward, and then you will be prompted to create the ward account. You can manage both accounts using the same login. For more information about the process of creating a ward account, you can also visit the Luna Help Center.

After you have set up the ward account, you’ll be able to complete the Luna platform consent for them and join the “ADLD Research Hub: Start Here” study to enter their information. This study is open to all registry participants (patients and family members). It has four simple activities that will help us better understand who is participating in the registry and what their needs and priorities are:

Your Experience with ADLD: For Patients. A short survey about patients’ experience with ADLD (you should complete this survey on behalf of your ward)
Your Experience With ADLD: For Caregivers and Family Members. A short survey about the family member or caregiver experience with ADLD (do not complete this while in the ward account; instead wait to take it when you are in your own account)
A demographics survey. (Complete this with the ward in mind.)
A request to connect electronic health records for your ward. Currently only available for participants in the United States.)

After you have entered information for the ward account, you can use the account you created for yourself to manage the ward account to enter information about your own experience. You will be asked to join the same study, but instead of completing the patient survey about ADLD, you should complete the caregiver survey. You can also complete the demographics survey and connect your own electronic health records if you like.

Can I enter information about a loved one who passed away from ADLD?

We’re so sorry to hear about your loss. Yes, you can enroll your loved one in the registry using Luna’s ward feature. For more information about how to enroll a ward account, please see the FAQ on registering and entering information on behalf of an ADLD patient. If you have any questions or feedback you can also contact us.

I’m a family member or caregiver of an ADLD patient. How do I enter information about my own experience?

Your experience as a family member or caregiver is important – we want to know about your needs, too! We encourage you to create your own account with the registry and take our short caregiver and family member survey.

If you have already signed up in order to enter information on behalf of an ADLD patient: You can use the account you created for yourself in that process to enter information about your own experience. To log back in and access the “ADLD Research Hub: Start Here” study click here. If you have questions about how you set up your account or need help accessing the study, please contact us.

If you are a family member or caregiver but you are not entering information on behalf of an ADLD patient: You can create your own account with the registry to enter information about your experience. To do so, visit our sign-up page to create an account for yourself and start entering information about your experience. After you create your account you’ll be asked to complete the Luna platform consent. Once you’ve agreed to the consent you can join the “ADLD Research Hub: Get Started” study.

The “ADLD Research Hub: Get Started” study is open to all registry participants (patients and family members). It has four simple activities that will help us better understand who is participating in the registry and what their needs and priorities are:

Your Experience with ADLD: For Patients. A short survey about patients’ experience with ADLD (you should not take this if you have not been diagnosed with ADLD)
Your Experience With ADLD: For Caregivers and Family Members. A short survey about the family member or caregiver experience with ADLD (as a family member or caregiver, you should take this!)
A demographics survey.
A request to connect your electronic health records. (Currently only available for participants in the United States.)

As we learn more about the needs of the ADLD community and work with ADLD researchers to develop new studies, we’ll continue to launch new activities every few months or so. We’ve already heard from family members about interest in a survey to track possible symptoms of ADLD prior to diagnosis. If you have other ideas about what we should do with the registry, please share them in the surveys or by contacting us.

Data privacy and security

How is my information protected?

All data is stored within the Luna platform which complies with U.S. and E.U. privacy regulations and implements the latest data security protocols. Data never leaves the platform without your consent. You can visit the Luna Help Center to learn more.

How is my information used?

Analysis of ADLD Research Hub data will help us understand the needs of the ADLD community. Analysis of this data will also develop our understanding of how ADLD progresses and help improve ADLD patients’ care and quality of life. The data you share may also be used to connect you to new research studies about ADLD that might interest you.

In order for ADLD Center or other researchers to access your data, you must give them permission, and researchers must have their proposed research reviewed by an ethics committee. Your data cannot leave the platform unless you allow it.