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Active, not recruitingNCT04805658ReSaUpdated Mar 21, 2025

Natural History Study of Retinitis Pigmentosa Type 11

An observational study in Retinitis Pigmentosa 11 and Retinitis Pigmentosa, sponsored by Oslo University Hospital. Active, not recruiting at 1 site in Norway. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-03-21.

Sponsored by Oslo University Hospital · Observational

Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
30
Ages
18 Years and older
Sex
All
01

Study summary

Observational study of patients with retinitis pigmentosa type 11

Read the detailed description

Natural history study with clinical examination every 6 months.

02

Conditions studied

  • Retinitis Pigmentosa 11
  • Retinitis Pigmentosa

Keywords

  • Retinitis
  • RP
  • PRPF31
03

In context

Retinitis Pigmentosa

278 studies on the registry are indexed under Retinitis Pigmentosa; 72 are open to participants now.

This study's enrollment of 30 is below the median of 52 across 87 observational studies indexed under Retinitis Pigmentosa.

Browse Retinitis Pigmentosa studies →

Lead sponsor

Oslo University Hospital is the lead sponsor of 834 studies on the registry; 149 are open to participants now.

Browse Oslo University Hospital studies →

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Probability sample

Study population

All patients over the age of 18 with the clinical diagnosis of retinitis pigmentosa type 11 or asymptomatic carriers of the disease.

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.

Inclusion criteria

  • Clinical diagnosis of retinitis pigmentosa caused by a disease-causing mutation involving the PRPF31 gene
  • Or disease-causing mutation involving the PRPF31 gene without the clinical diagnosis of retinitis pigmentosa

Exclusion criteria

Exclusion Criteria:

  • Under 18 years
  • Other types of retinitis pigmentosa
05

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
30 participants (actual)
Patient registry
No

Interventions

  • Diagnostic testClinical examinations

    Clinical examinations

06

What researchers measure

Primary outcomes

  1. Progression of disease

    Retinal function measured by functional and structural testing

    Time frame: 24 mounths

07

Study locations

1 site
08

References and documents

Individual participant data

Plan to share: No

No publications or documents are linked to this record.

09

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reachedSimilar studies: half by the dot; the band is the middle halfHalf of similar studies reached it by the dot; the band is the middle half, from a quarter to three quarters

Started Feb 2021 (actual). Primary completion is estimated for Apr 2028, 86 months after the start.

Of 48 observational studies under Retinitis Pigmentosa, half reached primary completion within 76 months of starting (the median), counting those still running; a quarter within 28. This study's planned 86 months is above that.

How these figures are worked out, and which studies are left out of them.

Registered
Mar 16, 2021
First posted
Mar 18, 2021
StartActual
Feb 1, 2021
Primary completionEst.
Apr 1, 2028
CompletionEst.
Apr 1, 2028
Last update
Mar 21, 2025
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Mar 21, 2025, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT04805658
Lead sponsor
Oslo University Hospital
Responsible party
Josephine Prener Holtan (Senior Consultant, MD PhD, Oslo University Hospital) — Principal investigator
First posted
Mar 18, 2021
Start date
Feb 1, 2021
Primary completion
Apr 1, 2028 (estimated)
Completion
Apr 1, 2028 (estimated)
Last update
Mar 21, 2025

Study contacts

Josephine P Holtan, MD, PHD
principal investigator · Department of Ophthalmology, Oslo University Hospital

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is active, not recruiting, as verified in Apr 2024. You cannot join it, but the record below documents what was studied.

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Discussion

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