Help Map the Future of Stargardt Disease Treatment

Stargardt disease and related Stargardt-type macular dystrophies may change how you see the world, but they do not have to take away hope. Local research studies … are interested in tracking how these rare conditions work to gather vital data that could help create tomorrow’s treatments.

See if you qualify

WHO CAN PARTICIPATE?

Clinical studies have strict guidelines to ensure patient safety and accurate results. While every study is different, currently enrolling local studies are looking for individuals 6 years of age and older who:

Have been diagnosed with Stargardt disease or Stargardt-like disease that may produce similar patterns of vision loss.
Have some blurriness or vision loss in the center of their eyesight.
Have never had gene therapy, stem cell therapy, or an eye microchip.

Additional criteria apply. A study doctor will determine final eligibility based on full medical criteria.

See if you qualify

How Clinical
Studies Work

Clinical studies are the foundation of medical advancement. Not all clinical research involves taking a new drug. Observational studies for Stargardt disease and related macular dystrophies allow researchers to watch and learn how these conditions change over time.

Participating in a clinical study means not only providing valuable data that opens doors to new potential treatments, but also helping shape the future of Stargardt care for generations to come.

Here’s a look at what a clinical Study for Stargardt disease might involve:

A principal investigator, or PI, is the physician in charge at a designated study site for the clinical study who is responsible for coordinating and overseeing the clinical study. That individual carries out what is called a protocol.

A Protocol is a document that describes how the study is designed, and outlines how it should be carried out.

Clinical studies, also called research studies, can be either interventional, or non-interventional. Interventional studies mean that they test out an intervention, like a drug, procedure or medical device. Non-interventional studies, also called observational studies, don’t test potential treatments. Instead, researchers observe the participants over a period of time, and track health outcomes.

Clinical Studies Make a Difference

Participation in a clinical study provides valuable information that could eventually lead to a better treatment and — with the right advancements — to better outcomes. Take our short survey to see if you or a loved one may be a good fit. There is no obligation to enroll.

Take Part in Innovation

Shape The Future

Help Others

Take the Survey

Understanding Stargardt-type Diseases

WHAT IS IT?

Stargardt disease and related macular dystrophies are rare genetic conditions that break cells in the center of the back of the eye (the macula). While they can be caused by different genes, the symptoms are often exactly the same.

While side (or peripheral) vision remains intact, losing that sharp, center vision makes it hard for people with Stargardt disease or a Stargardt-like dystrophy to read, drive, play sports, and recognize friends.

HOW IS IT TREATED?

Treatment currently involves managing symptoms, but there’s currently no treatment that can reverse the vision loss caused by Stargardt disease and Stargardt-type disease.¹

HOPE FOR THE FUTURE

Every patient’s timeline is different. By taking high-quality scans of how the eye changes over time, researchers lay the groundwork for future medical trials. Results could be part of the benchmark scientists use one day to see if a new drug is effective.

30,000+

Number of people currently living with Stargardt disease in the United States.²

FREQUENTLY ASKED QUESTIONS

What is the purpose of observational studies for Stargardt disease and Stargardt-type disease?

In observational studies, researchers watch and learn how conditions change over time. It allows them to gather valuable data that may inform the future of treatment for conditions like Stargardt disease.

Who may be a good candidate to apply for an observational study?

While every study is different, currently enrolling local studies are looking for individuals 6 years of age and older who:

Have been diagnosed with Stargardt disease or Stargardt-like disease that may produce similar patterns of vision loss.
Have some blurriness or vision loss in the center of their eyesight.
Have never had gene therapy, stem cell therapy, or an eye microchip.

Additional criteria apply. A study doctor will determine final eligibility based on full medical criteria.

What will happen during a clinical study for Stargardt disease and Stargardt-type disease?

Once qualified participants complete screening and review the Informed Consent Form, observational studies may involve scheduled visits at a local study eye clinic for standard eye exams, reading tests, and eye scans. Participants can expect to be treated with care and respect by a professional team.

Are there any costs to participate?

There is no cost to participate in a clinical study. Participants receive all study-related medical care for the duration of the study at no cost. Likewise in many instances, participants may also receive reimbursement for time and travel.

Can my child participate?

Many locally enrolling studies are seeking participants 6 or older. Additional criteria apply to be eligible for enrollment, and a study doctor will determine final eligibility based on full medical criteria.

Visit the full FAQ page

See If You Qualify

Still Have Questions?

Visit the Full FAQ Page