The cure for ADLD begins with you.
The ADLD Research Hub brings patients, caregivers, family members, and researchers together to drive towards a cure. Join today to help us understand the needs of the community and start conducting research!
Register As a Patient
Create an account for yourself to enter information about your experience as someone diagnosed with ADLD.
Need additional assistance? You can contact us, watch our video tutorial, or download the patient registration guide.
Register On a patient’s Behalf
Create an account to manage a ward to enter information for an ADLD patient who cannot manage an account on their own. You will create two accounts under one login: one account for the patient and one for yourself. You can use your account to enter information about your own experience as a family member or caregiver.
Need additional assistance? You can contact us, watch our video tutorial, or download one of our registration guides: one for entering patient information and one for entering information about family members and caregivers.
Register as A Family Member
Create an account for yourself to enter information about your experience as a family member or caregiver of an ADLD patient.
Need additional assistance? You can contact us, watch our video tutorial, or download the family member and caregiver registration guide.
The ADLD Research Hub is gathering the ADLD community together in one place to power the next stage of ADLD research.
Patients, caregivers, and family members can answer survey questions and share health information to support research to improve the quality of life of ADLD patients and develop a cure. To start, we’re asking all participants to share simple information about their background and needs so that we can understand what’s most important to the ADLD community. In the coming months, we’ll add more detailed studies about the ADLD experience for both patients and family members.
The ADLD Research Hub is a partnership between ADLD Center, the Luna platform (a public benefit corporation), and Genetic Alliance (a nonprofit organization). Luna provides the ADLD community with a secure platform to gather 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.
Why should I get involved?
-
- Accelerate the path to a cure. The ADLD Research Hub is the first effort to gather the ADLD community in a single place and collect data about patients’ and family members’ experiences. By sharing your information, you can help improve our understanding of ADLD and help us prepare for clinical trials.
-
- Participate in research to improve care and quality of life. The ADLD Research Hub gathers information about the issues that matter most to the ADLD community so we can conduct research to address unmet needs. Whether you’ve just been diagnosed, have been living with the condition for years, or you’re a family member or caregiver of an ADLD patient, your experience can help us understand how to better support ADLD patients and families.
-
- Join an active, global community. ADLD patients from all over the world are invited to participate in the ADLD Research Hub and contribute data over time. By signing up, you’ll join an active international community of patients, family members, and researchers helping to drive ADLD research forward.
ADLD patients, caregivers, and family members are all invited to join the ADLD Research Hub.
Any individual who has been diagnosed with ADLD is invited to join the registry by creating an account for themselves. Family members and caregivers may also register to enter information on behalf of someone diagnosed with ADLD if that person is not able to sign up on their own. They can do this by creating an account to manage a ward.
In addition to entering information on patients’ behalf, family members and caregivers of people diagnosed with ADLD are invited to share information about their own needs and experiences. They can do this from an account that was previously created to manage a ward, OR, if they are not managing a ward, by creating an account for themselves.
Getting started is easy!
To sign up, simply…
-
- Use the buttons below to create a Luna account
-
- Review and agree to the platform consent
-
- Join the “ADLD Research Hub: Start Here” study
-
- Complete the study activities
-
- Then stay tuned for more!
We’re currently collecting information about the experience of both ADLD patients AND caregivers or family members of ADLD patients, so you’ll see activities for both groups in the “ADLD Research Hub: Start Here” study. Activities are open to everyone unless they are labeled for a specific group. As the registry grows, we’ll add new activities based on the needs of the community and our research partners, including more detailed studies just for patients and just for family members or caregivers. You can expect to see new studies from us in a couple of months.
Your privacy is important.
You are in charge of how the data you share with the ADLD Research Hub is used.
ADLD Center understands that your health information is private. All data shared with the ADLD Research Hubis held to the highest security and privacy standards. You own your data every step of the way: you make decisions about what data to share and how, and you can view, download or delete your profile at any time. The only people who can see the data you share are those to whom you grant permission, and your data cannot be shared outside of the platform without your express consent.
The registry is hosted on the Luna platform. Luna is HIPAA (Health Insurance Portability and Accountability Act) and GDPR (General Data Protection Regulation) compliant, following both U.S. and E.U. privacy regulations. The Luna platform allows you to answer questionnaires and share health data with state-of-the-art privacy and security.
For more information about Luna, please review our FAQ page or visit Luna’s Help Center. You can also direct questions to registry@adld.center.
Need additional support?
Review our FAQ page or contact us at registry@adld.center to ask a question, share feedback, or request help.
