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Enhancing Rare Disease Research: Utilizing ERA-EDTA PRD Codes for Renal Registries in Europe

Learn how ERA-EDTA PRD Codes can improve renal registry coding and definitions in Europe. Explore the benefits of SNOMED CT and ICD-10 integration for better patient service, research, and data compatibility.

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Enhancing Rare Disease Research: Utilizing ERA-EDTA PRD Codes for Renal Registries in Europe

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  1. PRD_codes_KS_03102012.ppx

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

  3. Survival of all RRT patients by PRDScottish renal units

  4. a.

  5. Aim To improve and standardise the coding and definitions used by renal registries inEurope. .

  6. What do Drs Do? Service to patients diagnosis prognosis treatmentManaging the serviceResearch and quality improvementTeaching & learning Comparable data required .

  7. Some principles Usable by ordinary clinicians for routine workAcknowledge the uncertainties in clinical practice Incorporate the existing ERA-EDTA Codes & definitions PRD, CoDProvide working definitions Consistent with emerging medical standards SNOMED CTRigorous enough to support primary and epidemiology researchCompatible with other international registriesCapable of electronic transmission Acceptable to the ERA-EDTA registry and affiliated registries .

  8. 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 .

  9. ERA-EDTA Primary Renal Diagnosis .

  10. .

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

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

  13. PRD SNOMED id Concept mapping of the meaning .

  14. PRD SNOMED id Concept mapping of the meaning .

  15. Why map to SNOMED? .

  16. SNOMED CT Provides Extensive and well supported list of terms currentlanguage translation, literature links eg BMJ, Map of Medicinedecision support, queries using multiple domain hierarchies, secondary functions eg research, hospital management

  17. SNOMED CT Provides Extensive and well supported list of terms currentlanguage translation, literature links eg BMJ, Map of Medicinedecision support, queries using multiple domain hierarchies, secondary functions eg research, hospital managementWill soon be the only terminology supported by the NHS in the UK

  18. ICD 10 Hierarchy A bacterial infections B other infections C malignancies D benign neoplasmsE endocrineG CNS …N renal

  19. ICD 10 Hierarchy A bacterial infections incl meningiococcal meningitisB other infections incl H. influenzaC malignancies and sarcoidD benign neoplasmsE endocrineG CNS incl H. influenzae meningitis and Systemic atrophy of CNS in myxoedema…N renal

  20. ICD 10 Nephrotic

  21. ICD 10 Nephrotic N04

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

  23. ICD10 which language ?

  24. ICD10 which language ?

  25. ICD10 No semantic links

  26. SNOMED CT

  27. Includes foreign language and local terms .

  28. Conveys meaning not just a labelrelationships and attributes like: Is a kidney diseaseIs a … .

  29. .

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

  31. Rare Disease GroupDiagnoses Decide what you needCheck that they are in SNOMED CTLet 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 tothe 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 meyou have to provide the medical knowledge & intellectual input .

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

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