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FTD Registry FAQ

The FTD Disorders Registry (FTDDR) 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?
What is a contact registry?
Am I eligible to join the FTDDR Contact Registry?
What is a research registry?
Am I eligible to join the FTDDR Research Registry?
What is Informed Consent?
What happens if I take part in the FTDDR Research Registry?
Will I be expected to provide the FTD Registry with more information in the future?
How long must I participate?
What are the benefits of participating in the Research Registry?
Will researchers contact me directly about being in their studies?
Will any researcher be able to ask the FTD 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 in the FTD Disorders Registry?
Who "owns" the data in the FTD Disorders Registry?

What is A 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 into a central location.

For more information, watch this brief video in which Registry Director Dr. Dianna Wheaton gives an overview of patient registries.

What is the FTD Disorders Registry?

The goal of the FTD Disorders Registry is to be a Contact and Research Registry. It collects information from people diagnosed with FTD and their caregivers, family members, and friends so scientists and doctors can better understand these diseases. To protect your privacy, the information is made anonymous.

In this brief video, Registry Director Dr. Dianna Wheaton explains the purpose of the FTD Disorders Registry.

What is a contact Registry?

A contact registry is a type of registry that includes contact information and basic demographic data. A contact registry is NOT the same as an email list. Even in its basic form, a contact registry needs to collect enough information to determine who qualifies for a research study.

Am I eligible to join the Contact Registry?

To join, you must be diagnosed with FTD or be a family member, caregiver, or friend of an FTD-diagnosed person. Contact Registry enrollment is open to anyone in the world. 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 and the Registry, including news and general research updates.

What is a research registry?

A research registry is a complex registry that can be patient-centric or clinical-centric. In patient-centric registries, such as the FTD Disorders Registry, patients and their families or caregivers are the experts and report data based on their experience with a disease. These registries focus on qualitative data — descriptive information used to assess the impact of a disease on an individual or a family.

In clinical-centric research registries, doctors and researchers are the experts who decide what information is collected and analyzed. These registries contain data based on medical records that are generally entered by a member of the study team. They focus on quantitative data — information that is a measurement like height, weight, of laboratory test results.

Research registries, in general, are used to evaluate the natural history of a condition and generate new hypotheses (questions) for follow up study. Natural history studies monitor a disease over a period of time to define its natural progression. These studies are important as they serve as a baseline for studies that evaluate disease interventions.

Am I eligible to join the Research Registry?

To participate, you must be diagnosed with an FTD disorder or be a family member, caregiver, or friend 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; Alberta, Saskatchewan, and Newfoundland and Labrador currently excluded).

What is informed consent?

Research studies only include people who choose to take part. The Registry has a form called "informed consent" that describes your participation and lets you choose to participate.

FTD Disorders Registry's Informed Consent is available to read before registering.

What happens if I take part in the Research Registry?

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 recently, and whether you might be able to be 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.

Will I be expected to provide the FTD Disorders Registry with additional information in the future?

The FTD Disorders Registry is more valuable to participants and the scientific community when it is kept up-to-date. We, therefore, ask you to update your information at least once a year. You can also update your account whenever there is a change in symptoms or medical management.

How long must I participate?

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.

If you would like to be removed from the Registry, contact the FTD Disorders Registry at manager@ftdregistry.org. We will close your account. Any de-identified data that was shared with researchers before your request cannot be retrieved.

What are the benefits of participating in the Research Registry?

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.

Will researchers be contacting me directly about being in their studies?

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 scientists.

When participants enroll in the Research Registry, 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.

Will any researcher be able to ask the FTD Disorders Registry to contact participants?

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.

I want to be involved in a research study. If I register, is this guaranteed?

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.

I don't want to be involved in a research study. Should I still register?

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.

What are the risks of participating in the Registry?

The risks of taking part in the FTD 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. It is important to know that each person with an FTD disorder is unique, and the answers are important to learn about FTD.

Is my data safe?

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 Dr. Dianna Wheaton explains more about our data privacy and confidentiality policies and practices.

How does the registry de-identify my information?

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.

What happens to the information collected in the FTD Disorders Registry?

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 anonymous 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.

Who "Owns" the data in the Registry?

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).