You Got Your Genetic Test Results—Now What?

Getting your genetic test results can bring a lot of emotions—relief, worry, confusion, or even more questions than answers. No matter what your results say, you are not alone, and there are clear next steps you can take.

This guide will help you understand what your results might mean and what to do next.

First, Take a Moment

It’s okay to pause and process your results. Genetic information can feel overwhelming. Give yourself time, and remember—you don’t have to figure everything out right away.

A genetic counselor can help you understand your results and what they mean for you and your family.

What Do My Results Mean?Understanding Your Results

1. Positive Result (A Genetic Change Was Found)

This means a change in a gene—such as the GRN (progranulin) gene—was found that is linked to frontotemporal degeneration (FTD).

What this could mean:

• It may help explain symptoms (if you or your loved one has FTD)
• Other family members may also be at risk
• You may be eligible for certain research studies or clinical trials

Next steps:

• Talk with a genetic counselor about what this result means
• Consider sharing this information with family members
• Learn about clinical trials and research opportunities

2. Negative Result (No Genetic Change Was Found)

This means no known genetic cause of FTD was identified.

What this could mean:

• The condition may not be genetic, or
• There may be a genetic cause that current testing cannot detect yet

Next steps:

• Review your family history with a genetic counselor
• Ask if updated testing may be helpful in the future
• Continue working with your care team for diagnosis and management

3. Uncertain Result (Variant of Uncertain Significance or VUS)

Sometimes, testing finds a genetic change, but we don’t yet know if it causes disease.

What this could mean:

• More research is needed to understand the result
• The meaning of this result may change over time

Next steps:

• Stay in touch with your provider or genetic counselor
• Ask if your results will be reviewed again in the future
• Avoid making major medical decisions based only on this result

Your Results Can Affect Your Relatives Too

Genetic results can be important for your relatives. If a genetic cause is found, close family members may have a chance of having the same change.

A genetic counselor can help you decide who to tell and how to start that conversation - and can help your family members access testing if they choose.

What Happens Next for Care?

Your results can help guide what comes next, including:

• Care planning and monitoring
• Connecting with specialists
• Understanding what to expect over time

Even if your result is negative or uncertain, your care team will still focus on your symptoms and needs.

Could I Join a Clinical Trial?

If you have a genetic form of FTD—such as a change in the GRN gene—you may be eligible for clinical trials studying new treatments.

Participating in research is a personal choice, but it can:

• Give you access to new therapies
• Help advance science for future families
• Provide a sense of purpose and hope

The Progranulin Information Navigator can help you find trials that may be a good fit.

Check out our directory.

You Don’t Have to Do This Alone

Genetic testing is just one step in your journey. Whether your results were positive, negative, or uncertain, support is available.

Through the Progranulin Information Navigator, you can:

• Speak with a genetic counselor at no cost
• Learn what your results mean
• Explore options for your care and your family

Take the Next Step

If you have questions about your results or what to do next, consider speaking with a genetic counselor.

Understanding your genetics can help you make informed decisions—for yourself and for your family.

Check your eligibility.