FTD Registry FAQ
FTD Resources
The FTD Disorders Registry (Registry) has a list of Frequently Asked Questions (FAQ) about the Registry that you can read online or print as a handout.
For technical information about creating, managing, and updating your Registry account or troubleshooting any issue, please contact us at manager@FTDregistry.org or 888-840-9980.
What is a registry?
What is the FTD Disorders Registry?
How does the FTD Disorders Registry work?
What is the FTD Disorders Registry research study?
Am I eligible to join the FTD Disorders Registry research study?
What is Informed Consent?
What happens if I take part in the FTD Disorders Registry research study?
Will I be expected to provide the FTD Disorders Registry research study with additional information in the future?
How long must I participate?
What are the benefits of participating in the research study?
Will researchers be contacting me directly about being in their studies?
Will any researcher be able to ask the FTD Disorders Registry to contact participants?
I want to be involved in a research study. If I register, is this guaranteed?
I don't want to be involved in a research study. Should I still register?
What are the risks of participating in the Registry?
Is my data safe?
How does the Registry de-identify my information?
What happens to the information collected in the FTD Disorders Registry?
Who "owns" the data in the FTD Disorders Registry?
A registry is an electronic database of information about people with a specific disorder or medical condition. Registries are often created by patient groups, researchers, or medical professionals to collect information in a central location.
The FTD Disorders Registry is a critical tool in advancing the science towards a cure for all types of FTD disorders. By joining the Registry and sharing your insights on the lived experience of FTD disorders,
Our non-profit Registry controls data access and never shares identifying information.
In this brief video, Registry Director Carrie Milliard explains the purpose of the FTD Disorders Registry.
Any adult with a connection to FTD disorders can create an account with the Registry. We welcome those diagnosed with FTD disorders, their caregivers, family members, friends, researchers, and healthcare providers.
To join, you must be at least 18 years of age (19 in states and provinces where the age of majority is 19).
When you join, you will receive emails about FTD disorders and the Registry, including news and general research updates. You will also have access to the Registry dashboard where you can find educational resources, clinical trial notifications, and external research opportunities tailored to your interests.
Once you create an account in the Registry, eligible participants also have the option of registering to participate in our research study. Eligible participants include individuals diagnosed with an FTD disorder or a family member or caregiver of a person diagnosed with an FTD disorder.
As a participant in research, you will sign an informed consent form and complete surveys to provide your unique perspective.
Your insights combine with others in the research study to provide a better understanding of the lived experience of FTD disorders. This information accelerates research to develop improvements in care.
Your participation in research is always optional. If you decide to participate in Registry research, you can choose which surveys and activities you want to complete.
Information collected through the Registry is de-identified so your personal data and privacy is protected.
To participate, you must be diagnosed with an FTD disorder or be a family member or caregiver of an FTD-diagnosed person. You must be at least 18 years of age and a resident of the United States or Canada (19 in those states and provinces where the age of majority is 19).
Participation in a research study is optional. When you join our research study, the Registry will provide an Informed Consent form that provides detailed information about the study to help you decide if you would like to participate.
An Informed consent ensures that you fully understand the nature, risks, and benefits of your participation in a research study. By reviewing clear information about the study, you are empowered to make the best decision about your participation. An informed consent must be signed and dated to join the research study. To participate in the Registry research study, you will use your computer or mobile device to provide consent electronically.
FTD Disorders Registry's Informed Consent is available to read before registering.
If you participate, you will fill out a series of surveys. The surveys will ask things about you, what you or your loved one experienced, and whether you might be able to participate in other research or clinical trials. For most people, each survey will take less than 30 minutes to do. As a research participant, you also may be asked to participate in other studies. These studies may have a separate consent form and will be explained in detail before you decide whether or not to do them.
The FTD Disorders Registry is more valuable to participants and the scientific community when it is kept up-to-date. We will assign new activities to get a better understanding of your experience with FTD over time.
Your participation in this registry has no set time limit. You can stop at any time. Taking part in the Registry is voluntary — it is your choice.
To leave the Registry, please visit your dashboard. Click on Profile, then select Change of Status from the menu. Then click the Change Status button and then select Withdrawn to change your status from active to withdrawn. If you change your status to withdrawn, you can always re-join the Registry at any time. Please note: Any de-identified data that was shared with researchers before your request cannot be retrieved.
Participation in the FTD Disorders Registry may not benefit you personally, medically, or financially. However, your participation may benefit you and the FTD community by helping researchers better understand these rare and debilitating disorders. Collected data may help speed up research to find and test potential treatments and result in other medical advances to improve the outlook for individuals diagnosed with FTD disorders. In addition, Registry participants can choose to receive updates about clinical research studies or trials in which they can enroll.
No. Researchers interested in recruiting participants for studies cannot access your information. They can only contact the FTD Registry staff, who will then identify participants who might qualify for a specific study. The Registry contacts those participants or their families, and they choose whether or not to reach out to the study research team.
When participants enroll in the FTD Disorders Registry Research Study, they can fill out a "research readiness" survey which shows the types of research they would like to be in and how they would like to be contacted.
No. The FTD Registry has a scientific advisory committee and a management board that review requests. Only research studies that pass our strict review process will be shared with eligible participants. Among other criteria, each study must have ethical approval from the Institutional Review Board (IRB) at the researcher's home academic institution, university, or company.
One of the main goals of the FTD Registry is to make it easier for a person who is impacted by FTD to take part in research. Interested and willing Research Registry participants receive personalized study notices based on their survey answers. They then decide whether they want to learn more.
There is no guarantee that a participant or their family members will qualify for a study. Even if the person appears to be a good match based on the information in the FTD Registry, that person still needs to be screened after contacting that study's research team.
Yes. Even if you don't want to take part in a study, you can still help further the science of FTD. Your de-identified information is useful to doctors and researchers who are trying to learn more about people with FTD. Numbers have power and just being counted in the FTD Disorders Registry helps researchers better understand the need for new treatments.
The risks of taking part in the FTD Disorders Registry are low. By looking at the data contributed by all participants, you may learn information that is difficult or upsetting to you. You may find that some questions asked in the surveys are embarrassing, hard, or uncomfortable to answer and you can skip any questions you do not want to answer. It is important to know that each person with an FTD disorder is unique, and the answers are important to learn about FTD.
Loss of private or confidential information is a risk any time you share information. To keep this risk low, your information is stored in a secure online database. This database uses a security system with many safeguards and protections. Compliance to HIPAA (Health Insurance Portability and Accountability Act) rules and standards, Canadian privacy laws, and the European Union's General Data Protection Regulation (GDPR) also help minimize risks. The personally identifiable information that you provide to join the Registry is only seen by select FTD Disorders Registry staff on a strictly “need-to-know” basis and is never shared.
For more information, watch this brief video in which Registry Director Carrie Milliard explains more about our data privacy and confidentiality policies and practices.
When you register as a research participant, a research account is created with a login name and a password. This information is used to assign a unique alpha-numeric code (numbers and letters) to your profile called a Global Unique Identifier, or GUID. The GUID is associated with the data that you entered so that your identity cannot be linked to a research survey or other study. Only select members of the FTD Registry team have access to this code on a strictly "need-to-know" basis. The Registry will not keep or report data in a way that someone can be identified by their answer.
Registry data may be used in scientific presentations and publications to help inform the research community and public about FTD disorders in general. Scientists, clinicians, and other researchers can request access to the data stored in the Registry. Only de-identified data will be shared with researchers or published/presented at scientific meetings. The Registry will never release any personal information such as name, address, email, or phone number.
The FTD Disorders Registry LLC keeps the information in the FTD Registry. The LLC is a not-for-profit corporation set up just for the purpose of building and maintaining this to help the FTD community.
If you have questions about the FTD Disorders Registry or research participation, please contact the Registry Manager by email (manager@FTDregistry.org) or by phone (888-840-9980).