Retinitis pigmentosa: Overview of treatment options
What options are available – realistic goals, the role of TES therapy (OkuStim®), and how it differs from gene and rehabilitation approaches.
Therapy goals: What can realistically be achieved
Retinitis pigmentosa (RP) cannot currently be cured. The scientific literature recommends aligning therapy and care with three goals:
(1) slowing functional decline
(2) treating complications (e.g., lens opacification, macular oedema) in line with guidelines, and
(3) maintaining quality of life through rehabilitation and assistive devices. These goals reflect the current evidence and care landscape.1
Diagnostics first: Who benefits from which option?
RP is hereditary and genetically highly diverse. Genetic testing can set the course for therapy (e.g., assessing gene therapy for certain mutations), supports counselling, and facilitates access to studies. At the same time, only a small proportion of those affected currently have an approved gene therapy option (e.g., RPE65-associated forms).1
Important for follow-up monitoring: In RP, the visual field area typically decreases exponentially; studies report average annual declines (AAD) of around ~5–17%—depending, among other factors, on the measurement method and baseline level. Measurements should therefore be repeated in as standardised a way as possible (same method, similar conditions).
TES (OkuStim®) in studies – explained briefly
What is TES? Transcorneal electrical stimulation (TES) stimulates the retina via weak alternating currents at the surface of the eye. The aim is to activate cellular protective mechanisms to preserve existing visual function for longer.
What does the clinical evidence show?
A 12-month interventional randomised analysis with monocular application (weekly, 30 min) showed: visual field area (VFA) loss was lower in the treated eye than in the fellow or sham eye; a dose–response relationship was also observed (higher current intensity → greater effect). Tolerability: the published analyses predominantly described mild, transient complaints (e.g., dry eyes); severe therapy-related events were not typical, and no current-intensity-dependent increase in severe events was observed.3
CONCLUSION: TES does not cure RP, but studies suggest it can slow visual field loss. Whether TES is suitable for you should be clarified with your ophthalmologist—including goals, appropriate current intensity, and standardised follow-up checks.2,3
Distinction: Other therapeutic directions in research
Gene therapy (e.g., RPE65) – who is it suitable for?
Gene therapy is available for a small subgroup with RPE65 mutations; for the majority of RP forms, there is still no approved option. Clinical studies are crucial here to evaluate the efficacy and safety of new approaches.1
Optogenetics, cell replacement, implants – what is in studies?
Optogenetic approaches, cell-based therapies and retinal implants are being investigated scientifically. They are intended to reactivate or supplement retinal function—so far predominantly in the context of studies with strict indication criteria.4
Treatment of comorbidities & rehabilitation
Regardless of disease-specific therapies, comorbidities (e.g., cataract, macular oedema) should be treated in line with guidelines. At the same time, low-vision rehabilitation is central to maintaining mobility, ability to work and participation. Studies describe a substantial burden in everyday life (psychosocial, occupational, economic)—rehabilitation, assistive devices and counselling are therefore beneficial early on.1
What does this mean in practical terms for those affected?
- Set goals: Do you want to preserve function, make everyday life easier, or both? Discuss priorities openly.1
- Consider TES: If retinal function is preserved, TES (e.g., with OkuStim®) may be an option—bearing in mind the dose-dependent slowing of VFA loss and favourable tolerability in studies.2,3
- Gene therapy selectively: Review genetic findings (e.g., RPE65). For many other forms, studies are currently the bridge to new therapies.1,4
- Take a holistic approach: Rehabilitation & assistive devices (contrast/lighting, magnification, orientation/mobility, digital assistance) are an integral part of care and can noticeably stabilise quality of life.1
References
1 Cross N et al. Retinitis Pigmentosa: Burden of Disease and Current Unmet Needs. Clin Ophthalmol. 2022;16:1993–2010.
2 Stett A et al. Transcorneal electrical stimulation dose-dependently slows the visual field loss in RP. Transl Vis Sci Technol. 2023;12(2):29.
3 Jolly JK et al. Transcorneal Electrical Stimulation for the Treatment of Retinitis Pigmentosa: A Multicenter Safety Study (TESOLA). Ophthalmic Res. 2020;63(3):234–243.
4 McClements ME et al. Optogenetic Gene Therapy for the Degenerate Retina: Recent Advances. Front Neurosci. 2020;14.
5 Allen PJ. Retinal prostheses: Where to from here? Clin Exp Ophthalmol. 2021;49:418–429.
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