Track this trial free. DataLookout checks ClinicalTrials.gov daily and emails you which fields changed on NCT05589714 (status, enrollment, completion dates, endpoints, sites) when this record is updated. Free accounts track up to 5 trials.

Track this trial

Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants

Study acronym: Uni-Rare
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

The 50 most recent of 59 record versions are listed below. See every version on ClinicalTrials.gov ↗

  1. Re-verified, no change to tracked fieldsv59
  2. Site details revised at 1 of 36 sitesv58
  3. Site details revised at 1 of 36 sitesv57
  4. Site contacts updated at 2 of 36 sitesv56
  5. Site contacts updated at 4 of 36 sitesv55
Show 45 earlier versionsHide 45 earlier versions
  1. Site contacts updated at 1 of 36 sitesv54
  2. Site details revised at 2 of 36 sitesv53
  3. Site contacts updated at 5 of 36 sitesv52
  4. Study sites: 37 to 36v51
  5. Site details revised at 1 of 37 sitesv50
  6. Study sites: 36 to 37v49
  7. Site contacts updated at 1 of 36 sitesv48
  8. Primary completion date: Dec 15, 2028 to Dec 15, 2029
    • Study sites: 35 to 36
    • Study completion date: Dec 15, 2028 to Dec 15, 2030
    v47
  9. Site details revised at 2 of 35 sitesv46
  10. Site details revised at 1 of 35 sitesv45
  11. Site contacts updated at 1 of 35 sitesv44
  12. Study sites: 34 to 35v43
  13. Site contacts updated at 1 of 34 sitesv42
  14. Site contacts updated at 4 of 34 sitesv41
  15. Study sites revised (34)v40
  16. Primary and study completion dates: Dec 15, 2026 to Dec 15, 2028
    • Study sites: 32 to 34
    v39
  17. Site details revised at 1 of 32 sitesv38
  18. Site details revised at 1 of 32 sitesv37
  19. Site details revised at 3 of 32 sitesv36
  20. Re-verified, no change to tracked fieldsv35
  21. Site details revised at 2 of 32 sitesv34
  22. Site details revised at 2 of 32 sitesv33
  23. Site details revised at 1 of 32 sitesv32
  24. Site details revised at 3 of 32 sitesv31
  25. Site details revised at 4 of 32 sitesv30
  26. Site contacts updated at 2 of 32 sitesv29
  27. Site details revised at 1 of 32 sitesv28
  28. Study sites: 33 to 32v27
  29. Site details revised at 1 of 33 sitesv26
  30. Site contacts updated at 1 of 33 sitesv25
  31. Site details revised at 5 of 33 sitesv24
  32. Site contacts updated at 2 of 33 sitesv23
  33. Site details revised at 1 of 33 sitesv22
  34. Site contacts updated at 1 of 33 sitesv21
  35. Site contacts updated at 3 of 33 sitesv20
  36. Re-verified, no change to tracked fieldsv19
  37. Site contacts updated at 2 of 33 sitesv18
  38. Site contacts updated at 1 of 33 sitesv17
  39. Site details revised at 4 of 33 sitesv16
  40. Site contacts updated at 14 of 33 sitesv15
  41. Study sites: 30 to 33v14
  42. Site details revised at 1 of 30 sitesv13
  43. Site details revised at 3 of 30 sitesv12
  44. Site details revised at 1 of 30 sitesv11
  45. Site contacts updated at 2 of 30 sitesv10
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
This is an international, multicenter study with two components: Registry * A standardized genetic screening and a prospective, standardized, cross-sectional clinical data collection * Enrollment is open to all genes on the RD Rare Gene List Natural History Study * A prospective, standardized, longitudinal Natural History Study * Enrollment opens gene-by-gene, based on funding and within-gene Registry enrollment The study objectives are as follows. Registry Objectives 1. Genotype Characterization 2. Cross-Sectional Phenotype Characterization (within gene) 3. Establish a Link to My Retina Tracker Registry (MRTR) 4. Ancillary Exploratory Studies - Pooling of Genes Natural History Study Objectives 1. Natural History (within gene) 2. Structure-Function Relationship (within gene) 3. Risk Factors for Progression (within gene) 4. Ancillary Exploratory Studies - Pooling of Genes
Trial Details
NCT Number NCT05589714
Lead Sponsor Jaeb Center for Health Research
Collaborators: Foundation Fighting Blindness
Conditions
(from sponsor)		 Inherited Retinal Degeneration, Retinitis Pigmentosa
Related terms Retinitis Pigmentosa
Enrollment 1,500 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov