1. PRD_codes_KS_03102012.ppx

2. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson UKRR Advisor keith.simpson@nhs.net

4. Survival of all RRT patients by PRD Scottish renal units

5. a.a.

6. To improve and standardise the coding and definitions used by renal registries in Europe. Aim.

7. What do Drs Do? Service to patients diagnosis prognosis treatment Managing the service Research and quality improvement Teaching & learning Comparable data required.

8. Usable by ordinary clinicians for routine work Acknowledge the uncertainties in clinical practice Incorporate the existing ERA-EDTA Codes & definitions PRD, CoD Provide working definitions Consistent with emerging medical standards SNOMED CT Rigorous enough to support primary and epidemiology research Compatible with other international registries Capable of electronic transmission Acceptable to the ERA-EDTA registry and affiliated registries Some principles.

9. PRD Headings. ERA-EDTA PRD ERA-EDTA Primary Renal Diagnosis (PRD) terms Histology Clinical history Family history Clinical Exam Biochemistry Immunology Urine analysis Imaging Gene test Other criteria & notes SNOMED CT concept identifier for focus concept SNOMED CT fully specified name SNOMED CT expression constraint Mapping to old PRD code Mapping to old PRD term Online Mendelian Inheritance in Man - link ICD10 code ICD10 rubric

10. ERA-EDTA Primary Renal Diagnosis.

11. .

12. The diagnosis The term we use = the ‘PRD’ The evidence <> a definition (yet) Notes Because we don’t have a definition.

13. The diagnosis The term we use = the ‘PRD’ The evidence <> a definition (yet) Notes Because we don’t have a definition.

14. PRD SNOMED id Concept mapping of the meaning.

15. .

16. Why map to SNOMED?.

17. SNOMED CT Provides Extensive and well supported list of terms current language translation, literature links eg BMJ, Map of Medicine decision support, queries using multiple domain hierarchies, secondary functions eg research, hospital management

18. SNOMED CT Provides Extensive and well supported list of terms current language translation, literature links eg BMJ, Map of Medicine decision support, queries using multiple domain hierarchies, secondary functions eg research, hospital management Will soon be the only terminology supported by the NHS in the UK

20. ICD 10 Hierarchy A bacterial infections B other infections C malignancies D benign neoplasms E endocrine G CNS … N renal

21. ICD 10 Hierarchy A bacterial infections incl meningiococcal meningitis B other infections incl H. influenza C malignancies and sarcoid D benign neoplasms E endocrine G CNS incl H. influenzae meningitis and Systemic atrophy of CNS in myxoedema … N renal

22. ICD 10 Nephrotic

23. N04

24. ICD10 Terms including ‘renal’ one example per letter

25. ICD10 which language ?

27. ICD10 No semantic links

28. SNOMED CT

29. Includes foreign language and local terms.

30. Conveys meaning not just a label relationships and attributes like: Is a kidney disease Is a ….

31. .

32. UK Renal SNOMED CT subset. Includes: most of the existing renal terms – about 1100 and the new ERA EDTA PRDs Managed by: UK Renal Terminology Committee (RIXG & RA) working with the NHS Terminology Centre Purpose: Patient records, Registries, RADAR, RDGs, research, TheProject

33. Rare Disease Group Diagnoses. Decide what you need Check that they are in SNOMED CT Let me know If you can’t find what you need fill in a questionnaire ( on RA Web or Sue Shaw UKRR ) for each diagnosis required in as much detail as you can and send to the UK renal terminology committee (via the Chair Dr Afzal Chaudhry or me). New terms, codes will then be generated by the NHS Terminology Centre, returned to us and added to the drop down pick lists for your RDG sent to IHTSDO in Copenhagen for inclusion in the SNOMED CT International Release If you need help, ask Afzal or me you have to provide the medical knowledge & intellectual input

34. Summary New ERA EDTA PRD terms & codes mapped to SNOMED CT, ICD10 and old EDTA PRD codes Benefits of SNOMED CT but generation of new codes requires input from: disease experts (you) terminologists (at NHS TC)