Registry for inherited retinal degenerative diseases

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The My Retina Tracker Registry is an observational registry designed for individuals affected by rare inherited retinal degenerative diseases. Participants create a personal profile that captures their experiences, family history, genetic testing results, and health status, which they can update regularly. Clinicians can also add clinical measurements to the participants' profiles, allowing for a comprehensive longitudinal record of disease progression. The registry aims to enhance understanding of these diseases and facilitate research participation.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Diagnosed with an inherited retinal degenerative disease OR

Exclusion Criteria:

* Glaucoma only
* Diabetic retinopathy only
* Non-retinal disease
* Not heritable retinal disease

Where it's running

• Foundation Fighting Blindness
  Columbia, Maryland, United States Recruiting

Study contacts

• Principal investigator: Todd Durham, PhD — Senior Vice President, Clinical and Outcomes Research
• Study coordinator: Registry Coordinator
• Email: Coordinator@MyRetinaTracker.org
• Phone: 800-683-5555

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Imaging of outer retinal diseases using adaptive optics

  This study is trying to take detailed pictures of the retina in people with outer retinal diseases to help find better ways to diagnose and understand these conditions.

  Recruiting at 2 sites Food and Drug Administration (FDA) · Bethesda, Maryland and 1 other locations · NCT05355415

• Sepofarsen injections for LCA10 due to the CEP290 p.Cys998X mutation

  This study will test whether sepofarsen eye injections can improve vision in children and adults with LCA10 caused by the CEP290 c.2991+1655A>G (p.Cys998X) mutation.

  Recruiting at 17 sites Phase 3 Laboratoires Thea · San Francisco, California and 17 other locations · NCT06891443

• Investigating OpCT-001 for treating primary photoreceptor disease

  This study is testing a new treatment called OpCT-001 to see if it can safely help adults with primary photoreceptor diseases, like Retinitis Pigmentosa and Usher Syndrome, improve their vision.

  Recruiting at 5 sites Phase 1/2 BlueRock Therapeutics · Los Angeles, California and 4 other locations · NCT06789445

• Identifying potential participants for Stargardt disease clinical trials

  This study is trying to find people with Stargardt disease who might qualify for upcoming clinical trials by checking if they meet certain criteria, like having specific gene mutations.

  Recruiting at 7 sites Ascidian Therapeutics, Inc · San Francisco, California and 8 other locations · NCT06445322

• Assessing vision measurement methods for patients with retinal degeneration

  This study is testing different ways to measure vision in people with retinal degeneration to see how their eyesight affects daily life and how it changes over time.

  Recruiting Ray Therapeutics, Inc. · Irvine, California · NCT06375239

• Using stem cells to treat retinal and optic nerve damage

  This study is testing if using stem cells from your own bone marrow can help improve vision in people with serious eye damage from conditions like age-related macular degeneration and optic nerve problems.

  Recruiting at 4 sites MD Stem Cells · Westport, Connecticut and 3 other locations · NCT03011541

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.