Understanding Participant Roles

The FTD Disorders Registry is open to anyone who wants to create an account and be counted as part of the Registry community. However, only certain participant roles are included in the FTD Disorders Registry Research Study.

These roles determine:

  • Who is part of the Registry Research Study
  • Which surveys and questionnaires someone receives as part of the study
  • What types of research opportunities they may hear about

The roles below describe who can participate in the Registry Research Study and how each role is defined.

Person Diagnosed

A Person Diagnosed is someone who has been diagnosed with frontotemporal degeneration (FTD) or a related disorder.

This includes individuals diagnosed with conditions such as:

  • Behavioral variant FTD (bvFTD)
  • Primary progressive aphasia (PPA)
  • Progressive supranuclear palsy (PSP)
  • Corticobasal degeneration (CBD)
  • FTD with ALS (FTD-ALS)
  • Other clinically related FTD syndromes

Diagnosed persons may consider participation in:

  • Observational studies
  • Clinical trials
  • Imaging or biomarker studies
  • Surveys and interviews
  • Other types of FTD research

Some studies may involve in-person visits, while others may be remote or survey-based.

Whenever possible, we recommend that each person manage their own Registry account. If a diagnosed person is unable to manage their own account, it is best for their Legally Authorized Representative (LAR) to create and manage their own account where they will answer questions on the diagnosed person’s behalf. The diagnosed person also has the option to select a Reporter who can share their own observations.

Legally Authorized Representative (LAR)

A Legally Authorized Representative (LAR) is a person who is legally permitted to make research and medical decisions on behalf of someone else who cannot make those decisions themselves.

An LAR may be:

  • A legal guardian
  • A person with medical power of attorney
  • Another person recognized under local or state law

In the Registry, a LAR:

  • Creates and manages their own Registry account
  • Answers questions and completes study activities on behalf of the diagnosed person
  • Provides consent for research participation, when applicable
  • Helps review and respond to study opportunities

Care Partner (Caregiver)

A Care Partner (also called a caregiver) is someone who provides regular care or support for a person diagnosed with FTD.

This may include:

  • A spouse or partner
  • An adult child
  • Another family member
  • A close friend or companion

Care partners may consider participation in:

  • Caregiver surveys
  • Interviews about caregiving and quality of life
  • Studies focused on caregiver burden, stress, or support needs
  • Studies that involve providing information about the diagnosed person’s symptoms or daily functioning

Care partners will answer questions in the Registry Research Study based on their own observations and experiences.

Care partners who also act as the diagnosed person’s legally authorized representative (LAR) may add a second role to their account as a LAR to answer on behalf of the person diagnosed.

Biological Family Member

A Biological Family Member is someone who is biologically related to a person with FTD but is not necessarily a caregiver and may or may not have symptoms.

This can include:

  • Children
  • Siblings
  • Parents
  • Other blood relatives

Biological family members may consider participation in:

  • Genetic research studies
  • Family history or observational studies
  • Surveys about family experience and risk
  • Prevention or early-detection research

Reporter

A Reporter is someone who provides information to the Registry about a person with FTD but is not enrolling themselves as a research study participant.

A Reporter may be:

  • A family member
  • A friend
  • A caregiver
  • Another person involved in the individual’s care

Reporters help by:

  • Entering or updating information about the diagnosed person
  • Helping keep Registry information accurate and up to date

Being a Reporter does not automatically mean the person will be contacted to consider participation in other research studies, unless they also enroll under another role (such as Care Partner, LAR, or Biological Family Member).

Why These Roles Matter

These roles help the FTD Disorders Registry:

  • Define who is part of the Registry Research Study
  • Assign the appropriate study surveys and questionnaires
  • Support ethical and legal consent requirements
  • Match the right people to the right research opportunities
  • Reduce unwanted or inappropriate study contacts
  • Make participation clearer and more efficient for everyone involved

Many people in the Registry have more than one role. For example, someone might be both a Care Partner and a Biological Family Member.

Not Sure Which Role Fits You?

If you are not sure which role (or roles) apply to you, you can still create a Registry account. The Registry will guide you through selecting the role or roles that best describe your situation. You can also reach out to the Registry Manager for help choose the role(s) that best match your situation at manager@ftdregistry.org or by phone at  888-840-9980.