ICD coding for rare diseases
The International Classification of Diseases (ICD) is the code used for the purpose of documenting a person's medical condition. It is usually important for health insurance reimbursement, administration, epidemiology, and research. Of the approximately 7,000 rare diseases, only about 500 have a specific code. 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.[1]
Different versions of the ICD code exist worldwide. The United States currently uses the ICD-10-CM, a Clinical Modification of the WHO 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; 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.[1]
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 GARD website for a list of disease advocacy organizations. A GARD Information Specialist can be contacted directly for assistance.[1]
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 (OMIM), the Unified Medical Language System (UMLS), 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.[1]
Other versions
Several online resources can help locate ICD codes:
See also
Wikisource has original text related to this article: |
References
- "ICD Coding for Rare Disease". 24 June 2016. Retrieved 25 July 2017. This article incorporates text from this source, which is in the public domain.
- "ICD-10 Version:2016". apps.who.int.
- "List of Official ICD-10 Updates". World Health Organization.
Topographical codes | |||||
---|---|---|---|---|---|
Diagnostic codes |
| ||||
Procedural codes | |||||
Pharmaceutical codes | |||||
Outcomes codes |
Tests and procedures involving the central nervous system | |||||||||
---|---|---|---|---|---|---|---|---|---|
Skull | |||||||||
Brain |
| ||||||||
Meninges | |||||||||
Spinal cord and spinal canal | |||||||||
Imaging | |||||||||
Diagnostic | |||||||||
Clinical prediction rules |
Tests and procedures involving the heart | |||||||
---|---|---|---|---|---|---|---|
Surgery |
| ||||||
Tests |
| ||||||
Function tests | |||||||
Pacing | |||||||
Category |
Vascular and Endovascular surgery |
| ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Medical imaging |
| ||||||||||
Other diagnostic |
Procedures relating to the haematopoetic and lymphatic systems | |
---|---|
Bone marrow | |
Thymus | |
Spleen | |
Lymph nodes | |
Tonsils |
|
Imaging |
Tests and procedures involving the eyes | |||||
---|---|---|---|---|---|
Adnexa |
| ||||
Globe |
| ||||
Extraocular muscles | |||||
Medical imaging | |||||
Eye examination | |||||
Radiotherapy |
Tests and procedures on the ear | |
---|---|
Outer ear | |
Middle ear | |
Inner ear | |
Tests |
Mouth |
| ||||||||
---|---|---|---|---|---|---|---|---|---|
Oropharynx |
|
Tests and procedures involving the respiratory system | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Surgery |
| ||||||||||
Tests |
| ||||||||||
Other procedures |
|
Test and procedures involving the endocrine system | |
---|---|
Pancreas |
|
Pituitary | |
Thyroid | |
Adrenal gland | |
Pineal gland |
Tests and procedures on the skin and subcutaneous tissue | |||||||
---|---|---|---|---|---|---|---|
Skin | |||||||
Hair |
Tests and procedures involving the breast | |
---|---|
Breast surgery | |
Breast imaging | |
Other |
Tests and procedures involving the female reproductive system | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Ovaries | |||||||||||
Fallopian tubes | |||||||||||
Uterus |
| ||||||||||
Vagina | |||||||||||
Vulva | |||||||||||
Medical imaging |
Tests and procedures involving the male reproductive system | |||||
---|---|---|---|---|---|
Prostate | |||||
Seminal vesicles | |||||
Vas deferens | |||||
Testes | |||||
Penis | |||||
Testes and penis | |||||
Other tests |
Tests and procedures relating to pregnancy and childbirth | |||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Maternal tests | |||||||||||||
Fetal tests |
| ||||||||||||
Interventions | |||||||||||||
Delivery |
|
subspecialties |
|
---|---|
General procedures |
Chiropractic | |
---|---|
Techniques | |
Education | |
Accrediting bodies | |
International organizations | |
People | |
|
X-ray/ Radiography |
| ||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
MRI | |||||||||||||||
Ultrasound | |||||||||||||||
Radionuclide |
| ||||||||||||||
Optical/Laser | |||||||||||||||
Thermography |
| ||||||||||||||
Target conditions | |||||||||||||||
|
Specific therapies |
| ||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Conditions | |||||||||||||||
Features and equipment |
| ||||||||||||||
|
Physical therapy and rehabilitation | |
---|---|
Physical rehabilitation disciplines | |
Education | |
Intervention techniques | |
Professional associations and regulatory agencies |
|
Other related articles |
Schools |
| ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Approaches | |||||||||||
Research | |||||||||||
Techniques |
| ||||||||||
People |
| ||||||||||
Associations |
|