Просмотр кода страницы Английская Википедия:ICD coding for rare diseases

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{{Short description|Codes in the International Classification of Diseases}}
The '''ICD coding for rare diseases''' is the [[International Classification of Diseases]] code used for the purpose of documenting rare diseases. It is important for [[health insurance]] reimbursement, administration, [[epidemiology]], and [[research]]. Of the approximately 7,000 [[rare disease]]s, only about 500 have a specific code. However, more than 5400<ref>{{cite journal | vauthors = Aymé S, Bellet B, Rath A | title = Rare diseases in ICD11: making rare diseases visible in health information systems through appropriate coding | journal = Orphanet Journal of Rare Diseases | volume = 10 | issue = 1 | pages = 35 | date = March 2015 | pmid = 25887186 | pmc = 4377208 | doi = 10.1186/s13023-015-0251-8 | doi-access = free }}</ref> rare diseases are included in ICD-11 and can be recorded using an ICD-11 URI.{{clarify|date=September 2022|reason=What does URI mean?}} An ICD code is needed for a person's medical records—it is important for health insurance [[reimbursement]], administration, epidemiology, and research. Finding the best ICD code for a patient who has a rare disease can be a challenge.<ref name = NIH2016>{{cite web | date = 24 June 2016 | access-date = 25 July 2017 | title = ICD Coding for Rare Disease | url = https://rarediseases.info.nih.gov/guides/pages/123/icd-coding-for-rare-diseases}}{{PD-notice}}</ref>

== Versions ==

Different versions of the ICD code exist worldwide. The United States currently uses the [[ICD-10-CM]], a Clinical Modification of the World Health Organization standard for diagnoses adapted for insurance reimbursement and billing purposes. This version allows for further breakdown of a code, which increases diagnosis specificity. Currently, published material that reference ICD-9-CM codes, which were used before October 1, 2015;{{Clarify|reason=incomplete sentence|date=August 2023}} however, not every code in the ICD-9-CM has a corresponding code in ICD-10-CM. Europe and other parts of the world use the [[ICD-10]]. The root codes for ICD-10 and ICD-10-CM are the same, making it helpful for locating codes for general body systems and disease processes.<ref name = NIH2016/><ref>{{cite web| url= https://truemedtx.com/ |title= TrueMed-Rare Disease Company }} Tuesday, 29 November 2022 </ref>

In ICD-11 the search and coding of any disease, including rare ones is done via the ICD-11 website.<ref>{{cite web | url = https://icd.who.int/browse11/l-m/en#/ | title = ICD-11 for Mortality and Morbidity Statistics | work = International Classification of Diseases | publisher = World Health Organization }}</ref> Retaining detailed information about every individual rare diseases is best done with the URI in ICD-11.<ref>{{cite web | url=https://www.who.int/standards/classifications/frequently-asked-questions/rare-diseases | title=Rare diseases | work = International Classification of Diseases | publisher = World Health Organization }}</ref>

=== Older versions === 
Several online resources can help locate ICD codes:
*[https://icd.who.int/browse11/l-m/en#/ WHO ICD-11 release version] – A searchable online version of ICD-11 that allows users to search by hierarchy or by entering the disease name.<ref>{{cite web|url=https://icd.who.int/browse11/l-m/en#/|title=ICD-11 |website=icd.who.int}}</ref>
*[https://icd.who.int/browse10/2019/en WHO ICD-10 Version: 2019] – A searchable online version of ICD-10 that allows users to search by hierarchy or by entering the disease name.<ref>{{cite web|url=https://icd.who.int/browse10/2019/en#/|title=ICD-10 Version:2019|website=apps.who.int}}</ref>
*List of Official ICD-10 Updates - ICD-10 updates endorsed by the WHO.<ref>{{cite web|url=https://www.who.int/classifications/icd/icd10updates/en/|archive-url=https://web.archive.org/web/20061022072435/http://www.who.int/classifications/icd/icd10updates/en/|url-status=dead|archive-date=October 22, 2006|title=List of Official ICD-10 Updates|website=World Health Organization}}</ref>

== Advocacy groups ==
A good place to start is to contact an [[advocacy]] organization for the rare disease. These organizations are often aware of how the condition has been coded for other patients with the same diagnosis and may be able to recommend one or more codes to use. Many disease advocacy organizations also have medical advisory boards or physician directories, which can help to find someone with experience coding for that particular condition. A search can be done on the Genetic and Rare Diseases website for a list of disease advocacy organizations. A Genetic and Rare Diseases information specialist can be contacted directly for assistance.<ref name = NIH2016/>

== Orphanet ==

[[Orphanet]] is a European reference portal for information on rare diseases and orphan drugs. Orphanet outlines the ICD-10 coding rules for rare diseases included in their database. The Orphanet database also often includes coding information for the [[Online Mendelian Inheritance in Man]], the [[Unified Medical Language System]], and more. When a diagnosis has not been established, or when a code does not exist for a specific rare disease, general coding guidelines indicate that it is acceptable to use codes that describe signs and symptoms.<ref name="NIH2016" />

== See also ==
{{Wikisource|ICD-10-PCS (2011)}}
*[[ICD-10 Clinical Modification]]

== References ==
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{{Medical classification}}
{{Central nervous system tests and procedures}}
{{Cardiac surgery}}
{{Vascular surgery procedures}}
{{Operations and other procedures of the hemic and lymphatic system}}
{{Eye surgery}}
{{Operations and other procedures on the ear}}
{{Operations and other procedures on the nose, mouth, and pharynx}}
{{Respiratory system surgeries and other procedures}}
{{Digestive system surgical procedures}}
{{Endocrine system operations and other procedures}}
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{{Urologic surgical and other procedures}}
{{Female genital procedures}}
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{{Medical placement and administration procedures}}
{{Chiropractic}}
{{Medical imaging}}
{{Radiation oncology}}
{{Physical therapy and rehabilitation}}
{{Psychologic and psychiatric evaluation and testing}}
{{Psychotherapy}}

[[Category:Clinical procedure classification]]
[[Category:Rare diseases]]
[[Category:Human diseases and disorders]]
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