An observational study in X-Linked Retinitis Pigmentosa, sponsored by Beacon Therapeutics. Completed at 3 sites in United States. Open to male participants aged 6 Years and older. Per ClinicalTrials.gov, last updated 2023-01-11.
Sponsored by Beacon Therapeutics · Observational
Among 84 studies in Retinal Degeneration with a site in United States — 11 open to participants now, 29 under way, 3 of them phase 3. Retinal Degeneration · United States.
Among the 84 studies in Retinal Degeneration with a site in United States, this one is the 20th largest by enrollment of the 21 observational ones that give a count, is one of 2 that started in 2017, is one of 22 observational ones, and was the 26th registered.
132 studies on the registry are indexed under Retinal Degeneration; 23 are open to participants now.
This study's enrollment of 14 is below the median of 78 across 32 observational studies indexed under Retinal Degeneration.
Browse Retinal Degeneration studies →11 of the 84 studies in Retinal Degeneration with a site in United States are open now.
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 15 Retinal Degeneration studies recruiting now, 10 (67%) set no upper age limit and 3 (20%) stop at 75 or younger; 7 take children under 18; 5 take healthy volunteers.
This study: 6 Years and older · male · no healthy volunteers.
The full table on the hub →84 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 24 · Phase 2 33 · Phase 3 13 · Phase 4 2
First in 1978; this study’s year is marked. 2 started in 2017.
Median enrollment 51 across the 62 interventional studies, 83 across the 21 observational. Of the 50 that completed or were terminated, 27 (54%) have results posted.
58 of 84 have an industry lead sponsor. The 10 most frequent:
Beacon Therapeutics is the lead sponsor of 13 studies on the registry; 1 is open to participants now.
Beacon Therapeutics has 7 studies filed under Retinal Degeneration — fewer than ten, so there is no comparison to draw.
7 of the studies in Retinal Degeneration with a site in United States that are under way reach primary completion within a year, 1 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT04704921Phase 3AbbViePivotal 1 Study of ABBV-RGX-314 (Also Known as RGX-314) Gene Therapy Administered Via Subretinal Delivery One Time in Participants With nAMD | 2026-12 |
| NCT05748873SparingVisionPromising ROd-cone DYstrophy Gene therapY | 2027-02 |
| NCT06167642Johns Hopkins UniversityRetinal Atrophy and Neurofilament Light Chain in People With Multiple Sclerosis Taking Ofatumumab | 2027-03 |
| NCT06048185Nanoscope Therapeutics Inc.Non-interventional Long Term Follow-up Study of Participants Previously Enrolled in the STARLIGHT Study | 2027-05 |
| NCT04765345Jaeb Center for Health ResearchRate of Progression of PCDH15-Related Retinal Degeneration in Usher Syndrome 1F | 2027-06-30 |
Among the 84 studies in Retinal Degeneration with a site in United States, from their registry updates:
The purpose of this study is to evaluate subjects with X-linked retinitis pigmentosa caused by RPGR-ORF15 mutations in a clinical setting to fully characterize their condition, measure testing variability, and estimate rates of progression of clinical parameters.
Males with a clinical diagnosis of X-linked retinitis pigmentosa (XLRP) caused by RPGR-ORF15 mutations will be asked to provide informed consent and will have a single blood or saliva sample obtained for DNA sequence analysis of genes known to cause XLRP, including the RPGR-ORF15 gene. All participants will be informed of the results of testing for these mutations. Those with qualifying mutations in the RPGR-ORF15 gene will be evaluated every 6 months for 3 years using a variety of non-invasive visual function tests to more fully characterize their clinical condition. Testing will include routine ophthalmic examinations and tests of visual acuity, perimetry, OCT, fundus imaging, and completion of quality of life questionnaires.
Males with a clinical diagnosis of X-linked Retinitis Pigmentosa (XLRP)
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Disease progression in subjects with XLRP
Time frame: Day 0 - Month 36
Disease progression using visual acuity testing
Time frame: Day 0 - Month 36
Disease progression using perimetry
Time frame: Day 0 - Month 36
Disease progression using OCT
Time frame: Day 0 - Month 36
Disease progression using electroretinography
Time frame: Day 0 - Month 36
Disease progression using the National Eye Institute Visual Functioning Questionnaire-25 (VFQ-25) quality of life questionnaire
Time frame: Day 0 - Month 36
Plan to share: No
No publications or documents are linked to this record.
Ran from Dec 2017 to primary completion in Feb 2022, 50 months.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Jan 2023. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Beacon Therapeutics