Carrying the torch for Alzheimer’s research

If you or a loved one are noticing early signs of Alzheimer’s Disease (AD), consider joining the HERO study- a clinical research study exploring a new treatment option that might help prevent or slow the progression of AD symptoms.

See if You May Qualify!

Seeking Adults with Down Syndrome to Participate in a Clinical Trial

If you are 35-55 and have Down syndrome, consider joining the HERO study, a clinical trial investigating a new potential treatment to slow down or prevent Alzheimer’s Disease in adults with Down syndrome.

See if You May Qualify!

What is the HERO study?

The HERO study is a clinical research study for adults with early symptoms of Alzheimer’s disease (AD). The HERO study is researching the safety of a study medicine called ION269, and whether it might prevent or delay the onset and/or progression of AD symptoms.Doctors and scientists are researching a new study medicine called ION269 for adults with Down syndrome who might get Alzheimer’s Disease. Alzheimer’s Disease is a brain disease that causes problems with thinking, learning, and remembering. We hope this study medicine will help people with Down syndrome not have problems with their memory as they get older.

By joining the HERO study, you can help scientists and doctors learn if the study medicine is safe and if it works the way we expect. This could help people who may develop AD in the future.

Who can join the HERO study?

To join the HERO study, the study participant must have early symptoms of Alzheimer’s disease, and when applicable have a reliable study partner- this might be a spouse, sibling, or caregiver. The study partner must be above 21 years of age and have known the participant for more than six months.

*Other study requirements will apply

What will happen during the study?

Participation in the HERO study lasts about 12 months. Study participants can expect the following:

Review & Sign the Informed Consent Form

Prior to receiving the study medicine or health checks, study participants must read and sign either the Informed Consent Form (ICF) or the Assent Form. If you sign the Assent Form, your legally authorized representative (LAR) must sign the ICF (if applicable). Your study partner will need to sign a separate Study Partner ICF if they are not your LAR.

Screening Period (up to 6 weeks)

Study Participants and their Study Partners visit the study clinic for health checks. Health checks include a physical exam, blood and urine samples, a heart test, brain imaging (painless), and puzzles to understand how the brain is working. These confirm if you qualify for the study.

Study Treatment Period (9 months)

  • Participants and their study partners visit the study clinic about 10 times. All visits include more health checks like those from the screening period.
  • Over the duration of the treatment period, participants will undergo 5 injections in the lower back. The study medicine will be injected during the first lumbar puncture only. Participants may get medication to stay comfortable during the lumbar puncture.
  • In between visits, the study doctor calls the participants and study partners via phone to ask questions about how you are doing.

Follow-up Period (about 1 month)

After the last Treatment Period visit, participants and study partners receive 2 more calls from the study doctor and complete 1 more visit to the study clinic for final health checks.

Participation in a clinical study is voluntary. You can ask any questions you have and may leave the study at any time, for any reason.

Review & Sign the Informed Consent Form

Before you can have any study medicine or health checks, you must read and sign either the Informed Consent Form (ICF) or the Assent Form. If you sign the Assent Form, your legally authorized representative (LAR) must sign the ICF. Your study partner will need to sign a separate Study Partner ICF if they are not your LAR.

The Informed Consent Form (ICF) contains information about the study including its goals, duration, benefits, risks, tests and procedures. This must be signed by the participant and/or their legally authorized representative, as appropriate. The Assent Form explains the same things but is shorter and easier to understand.

Screening Period  (up to 3 months)

Participants and their study partner will visit the study clinic for health checks.
Health checks include a physical exam, blood and urine samples, a heart test, pictures of organs
(does not hurt), and questionnaires.

Study Treatment Period  (9 months)

Participants and their study partners visit the study clinic 9 times over 9 months. All visits include more health checks like those from the screening period.

Follow-up Period (about 1 month)

After the last Treatment Period visit, participants and study partners receive 2 more calls from the study doctor and complete 1 more visit to the study clinic for final health checks.

Participation in a clinical study is voluntary.
You can ask any questions you have and may leave the study at any time, for any reason.

What will happen during the study?

Participation in HERO study lasts about 12 months. Study participants can expect the following:

Interested in the HERO study?

Take the pre-screener to see if you may qualify!

Take the Pre-Screener

About the Study Medicine

What is the study medicine?

The study medicine, called ION269, is designed to help the body to produce less amyloid plaque (a sticky protein that damages the brain and is linked to Alzheimer’s Disease) If the study medicine works as intended, doctors hope that it may prevent or delay the onset and/or progression of AD symptoms.

Will I receive the study medicine?

Yes, all participants in the HERO study will receive the study medicine.

What does “investigational study medicine” mean?

ION269 is an investigational study medicine. This means doctors are studying it to find out if it is safe and if it works. It is not approved by regulatory agencies like the U.S. Food and Drug Administration or European Medicines Agency. It can only be used in clinical research studies like the HERO study.

About Alzheimer’s Disease

What is Alzheimer’s Disease (AD)?

Alzheimer’s disease (AD) is one of the most common brain diseases in the world. You are not alone. Although there is currently no cure for AD, doctors and scientists are working hard to develop medicines that may help to treat or even prevent AD.

As you may know, AD gradually causes problems with thinking, learning, and remembering. These symptoms increase over time, although the speed of progression can vary a lot between people.

Scientists do not know exactly what causes AD, but one factor that seems to play a role is having lots of amyloid plaque in the brain. Amyloid plaque is a sticky protein that damages the brain. Scientists want to develop medicines that help the body produce less amyloid plaque. They hope this may help prevent, slow down, or even stop AD symptoms.

Where can I learn more?

What is the link between Down Syndrome and Alzheimer’s Disease?

People with DS have >90% lifetime risk of developing Alzheimer’s Disease, and most exhibit AD neuropathy (amyloid positivity confirmed via amyloid PET scan) by 40 years of age.

Scientists think that the increased risk of AD — like other health issues associated with Down syndrome — results from the extra genes present.1 Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s disease as it carries a gene that produces one of the key proteins, amyloid protein, involved with changes in the brain associated with Alzheimer’s. The build-up of amyloid protein in the brain disrupts the way brain cells communicate with each other. Amyloid accumulation is seen in almost all adults over 40 with Down syndrome. Despite these brain changes, not everyone with Down syndrome develops Alzheimer’s symptoms.2

The development of AD in DS individuals is the target indication in this study.

Overview of Clinical Trials

Here are some common questions and answers about study participation.

If you have additional questions about participating in a clinical research study, contact a study clinic near you.

Study Clinic Locations

Find a study clinic near you!

Use the filters, map, and listing to find the study clinic closest to you participating in the HERO Study. Contact the study clinic to learn more, or take the pre-screener to see if you or a loved one may qualify.

This website is intended for US audiences only.
Stock photos posed by models 
Copyright © 2025 Medpace