Terminology Committee SNOMED CT Concept request form - November 2012 Request for Diagnostic Terms Rare Disease Groups & for the Practice of Renal Medicine in the UK Ver07 This form should be used to request a new SNOMED CT term and code. This may be required for a Rare Disease Group project but this form may also be used to request help in generating diagnostic terms and their correct codes for any other research, clinical, educational or service development project. Use a new form for each term required. Before completing the form, it is worthwhile checking the current version of SNOMED CT because the term needed may already exist. In that case you only need to send this request if you want the term displayed as part of a subset or pick list for a RADAR or RPV project. In that case, as well as including the term you need in drop down lists etc., we may ask you to provide further expert information about the disorder so that the correct semantic links can be created. The reason for this is explained below. Instructions about installing the free CliniClue SNOMED CT browser and the current version of the SNOMED CT data on your PC and how to access SMONED CT on a website are available on the Renal Association website at: http://www.renal.org/Libraries/Terminology_Committee/CliniClue_installation_guide_October_2012.sflb.a shx. It may be useful to discuss the question with the Chair of the Terminology Committee or intentionally to submit an incomplete form to stimulate discussion. In either instance or to submit a completed form, please contact the Chair, Dr Afzal Chaudhry, at anc35@cam.ac.uk, tel: 01223-331774. Page 1 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: 1) 1a) Describe the thing which you want to record using a structured SNOMED CT term. This could be but is not limited to a disease, diagnosis, syndrome, symptom, clinical finding, procedure or outcome. Professional terminologists will use this information to generate the ‘Fully Specified Name’ of the concept. That is intended to avoid ambiguity but it is still possible and indeed often desirable to use more familiar synonymous terms in daily practice. However, it is essential that the concept is described clearly and fully at this stage. 1b) Provide the ONE ‘Preferred term’ that you wish to be used for this concept. This can be a more familiar term often used in daily clinical practice. 1c) List those terms that that you wish to be used as a SYNONYM for this concept. These should be commonly used terms to represent the same concept other than the ‘Fully Specified Name’ and ‘Preferred term’. A narrower or broader synonym should be considered as an error. 1d) List any abbreviations, eponyms, pet names and anything else that might be useful as a search key. This need not imply that the term is correct or even approved – it just has to be useful. For example, the term 'MI' might be useful to find 'myocardial infarction', 'mitral regurgitation (mitral incompetence)', and if BG' were entered, it might be useful to offer both 'blood glucose' and 'arterial blood gas' even if 'BG' is not an approved term for either. Once the user has selected the correct term, it can be saved and displayed in a non-ambiguous way in the clinical record. Page 2 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: 2) SNOMED CT can cope with any level of granularity. For specialist and research work, it is usually important to specify a high level of granularity i.e. including of all the technical details. In order to provide the correct context for very granular terms, it is useful to identify the parent term that already exists and then to consider whether your new term will make more sense if you add some other intermediate granularity terms for similar specialised conditions that could exist under the parent term you have identified, even if you do not have any particular interest in them. When your new term is used, the presence of these other terms in the coding scheme makes it clear that the user has chosen your term in preference to the other available terms and did not use your term inappropriately when they were unable to find anything better and did not want to use a very general ‘parent’ term (which is what they should do if an appropriate granular term does not exist). For example, suppose you want to describe a dark blue diesel Ford Fiesta Econetic but you find the coding scheme only offers ‘Modes of transport’. You might then ask for some medium granularity terms to be generated to set the scene e.g. land, air, and sea transport. Then under ‘land’ you might want trains, buses and cars etc. 2a) Do you need help to search for existing terms? 2b) Do you need any new terms of ‘intermediate granularity’ to set the scene for the new terms that you plan to use? Yes / No (delete as appropriate) Yes / No (delete as appropriate) Page 3 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: 3) If you are aware of any reference to the topic in an existing coding or terminology system, please give as much information as possible e.g. an existing SNOMED CT term, the International Classification of Diseases (ICD), a specialty specific coding scheme or a clinical scoring scheme. 4) Please give references or web links to literature that will help the terminology group to understand the background to your term. 5) If an agreed definition of the term you are requesting already exists, please give references and URLs (as appropriate). 6) If you are aware of any points of possible confusion or contention, please highlight them here. Page 4 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: 7) SNOMED CT allows the meaning of clinical terms to be stored as well as the words. Provided that the concepts have been correctly interpreted, it does not matter which words, abbreviations, eponyms or even language are used to enter the data or to search databases. Obviously this can only work if knowledgeable experts control the initial registration of new terms and specify their meaning and context. This is referred to as the 'semantic links'. It is impossible to ask sensible questions that will elicit all of the correct semantic links for each and every concept which have not yet been properly defined so the questions below are just to give you an idea of what is required. The aim is to allow future users to capitalise on the ability of a SNOMED CT browser to generate a ‘mind map’ showing the logical links which will enable someone to find all the things with which your term is associated and to arrive at your term by following logical links from all the related terms. A useful way to do this is to answer the questions below. Examining the map for renal vein thrombosis at: http://www.renal.org/Libraries/Terminology_Committee/RVT_Is_A_mindmap_SNOMED_CT _2012.sflb.ashx may clarify what is required but remember if you are describing a new situation, you may need to work out new questions. Please discuss this with the Terminology Committee which has access to professional terminologists with specialist training in this work. Getting this right often requires a few iterative cycles with discussion between medical and scientific experts and terminologists. With reference to your proposed term can you describe it using any of the headings below? Make as many entries as you can in response to each statement. If you are an expert and know that the information does not exist, please enter N/A. If you personally do not know please enter ‘?’. If you can suggest other headings or questions, the answers to which will clarify the position, please add them below. Page 5 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: With respect to the new term and for all recognised (even if not well defined / described) phenotypes please provide information under the following headings with as much granularity / detail as possible. 7a) FINDING SITE: This specifies the body site affected by a condition, e.g. kidney structure. 7b) ASSOCIATED MORPHOLOGY: This specifies the morphologic changes seen at the tissue or cellular level that are characteristic features of a disease, e.g. splitting of the glomerular basement membrane. Note this is the place to make sure that the diagnostic histopathological features are properly represented in SNOMED CT. 7c) ASSOCIATED WITH: This asserts an interaction between two concepts beyond simple co-occurrence in a patient. This attribute does not assert or exclude a causal or sequential relationship between the two concepts, e.g. associated with systemic disease. CAUSATIVE AGENT: identifies the direct causative agent of a disease, e.g. organism, substance DUE TO: relate a finding directly to its cause. AFTER: a clinical finding occurs after another clinical finding or procedure. This attribute emphasis a sequence of events without asserting or excluding a causal relationship. e.g. perinephric haematoma after a renal biopsy; staphylococcal bacteraemia after insertion of a central venous catheter 7d) CLINICAL COURSE: This represents both the course and onset of a disease, e.g. chronic. Page 6 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: 7e) PATHOLOGICAL PROCESS: This represents the underlying pathological process which is not covered by associated morphology, e.g. infectious process. 7f) HAS DEFINITIONAL MANIFESTATION: This represents the manifestation which defines the disorder, e.g. immune system finding. If the disorder has been formally defined, this is where to state it. 7g) OCCURRENCE: This refers to the specific period of life during which a condition first presents, e.g. childhood. 7h) FINDING METHOD: This specifies the means by which a clinical finding is determined e.g. immunofluorescence microscopy; renal biopsy. 7i) FINDING INFORMER: This describes the person or other entity e.g. Rare Disease Group from which the clinical finding information is obtained. This attribute is frequently used in conjunction with FINDING METHOD. Page 7 of 8 Terminology Committee SNOMED CT Concept request form - November 2012 REQUEST FORM - NEW SNOMED CT DIAGNOSIS CONCEPT Questions: 8) Do you know if patients to whom this term may be applicable may be referred to other specialties? This information may help us to identify an appropriate terminology expert. 9) If the answers to any of the above questions contain information that should not be in the public domain until research work has been published, please clarify the exact position here. To submit a completed form, please return to the Chair of the Terminology Committee Dr Afzal Chaudhry Email: anc35@cam.ac.uk -o0o- Page 8 of 8