| Japan | Highest number (dura mater grafts) |
| France | Second highest |
| United States | Significant number |
| United Kingdom | Cases linked to growth hormone |
| Other countries | Sporadic cases |
| Dura mater graft | 1.5-25 years (median ~12 years) |
| Human growth hormone | 5-30 years (median ~12 years) |
| Corneal transplant | 1.5-5 years |
| Neurosurgery | 1-7 years |
| Blood transfusion | 5-8 years (possible cases) |
| Growth hormone cases | Mean age ~32 years (younger at exposure) |
| Dura mater cases | Mean age ~55 years |
| Databases | OMIMOrphanetClinicalTrialsPubMed |
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