Back to Rare Disease

NCT05589714

NCT05589714
Recruiting Not Applicable 🇦🇺 Australian site

Who may be able to join

Who might be able to join this trial:

  • You are willing to take part in the study and able to give your consent to participate
  • You are willing and able to complete all the required visits and assessments at the start of the study
  • You are 4 years of age or older
  • You have a genetic report from an approved laboratory showing a specific gene change (variant) linked to a rare disease — the type and number of gene variants required depends on how the condition is inherited (confirm with trial site for details on which gene changes qualify)
  • Both of your eyes have been diagnosed with a retinal dystrophy (a condition affecting the light-sensitive layer at the back of the eye)
  • Both of your eyes can produce good quality photographs for the study (for example, the eyes are clear enough and the pupil can be dilated adequately)

Who may not be able to join:

  • You have taken certain medications linked to causing damage to the retina (such as amiodarone, chloroquine, hydroxychloroquine, tamoxifen, or similar drugs) for more than 1 year in total at any point in your life
  • You currently have bleeding inside the eye (vitreous hemorrhage) in either eye
  • You have current complications from severe short-sightedness in either eye that would prevent good quality eye photographs being taken
  • You have had eye surgery (such as cataract surgery or laser eye surgery) in either eye within the last 3 months
  • You have ever been diagnosed with glaucoma (a condition that damages the optic nerve) in either eye
  • You have ever had a blockage of blood vessels in the retina, or advanced diabetes-related eye disease, in either eye
  • You have any other eye disease that, in the doctor's opinion, could affect the study results (confirm with trial site)
  • You have ever received stem cell or gene therapy in your eyes, or certain other specific eye treatments (such as ocriplasmin, or certain slow-release eye implants)
  • You have received a specific type of eye injection called an ophthalmic oligonucleotide within the last 9 months
  • You have received certain other treatments within a timeframe based on how long that treatment stays active in the body (confirm with trial site)
  • Minors (under the age of majority) who are pregnant may not participate until they reach adulthood

Important: Always verify eligibility with the trial site directly before applying.

Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.

Trial details

Status
Recruiting
Phase
Not Applicable
Sponsor
Jaeb Center for Health Research
Registry
clinicaltrials_gov
Start date
11 May 2023
Est. completion
15 December 2029

Where this trial is recruiting

🇦🇺 Australia 🇧🇪 Belgium 🇧🇷 Brazil 🇨🇦 Canada 🇫🇮 Finland 🇫🇷 France 🇮🇱 Israel 🇮🇹 Italy 🇲🇽 Mexico 🇳🇱 Netherlands 🇳🇴 Norway 🇨🇭 Switzerland 🇬🇧 United Kingdom 🇺🇸 United States

1 site(s) in Australia. Confirm current status and contact details directly with the trial site.

Primary endpoints

Functional Outcome: Characterize change using Visual field sensitivity measured with quantitative topographic analysis (hill of vision [HOV]); Functional Outcome: Characterize Change Using Early Treatment of Diabetic Retinopathy Study (ETDRS) / HOTV Best Corrected Visual Acuity (BCVA) letter score; Functional Outcome: Characterize Change Using Low visual acuity test - for participants unable to see ETDRS letters; Functional Outcome: Characterize Change Using ETDRS/HOTV best corrected low luminance visual acuity letter score; Functional Outcome: Characterize Change in Mean retinal sensitivity;...

Can't join this trial?

Expanded access pathways

If this trial is not available to you, other access pathways may exist. In Australia, the TGA Special Access Scheme allows access to unapproved therapeutic goods for individual patients.

TGA Special Access Scheme information

Find other recruiting trials on ClinicalTrials.gov

Data last synced from ClinicalTrials.gov: 30 June 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.

View original record on ClinicalTrials.gov