What is the Orpha code in relation to thyroid cancer?

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Last updated: May 7, 2025View editorial policy

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From the Guidelines

Orpha codes are unique identifiers assigned to rare diseases, including thyroid cancer, and serve as a standardized coding system to facilitate diagnosis, treatment planning, and research coordination. These codes are not specifically connected to thyroid cancer alone, but rather are part of a broader system for tracking rare diseases. Thyroid cancer, including its rare variants such as medullary thyroid carcinoma and anaplastic thyroid carcinoma, has Orpha codes assigned to it, which can help healthcare professionals, researchers, and health information systems to precisely identify these conditions 1. The use of Orpha codes can facilitate access to specialized care networks, clinical trials, and patient support groups focused on specific rare diseases, including rare thyroid cancers. According to the European reference portal for information on rare diseases and orphan drugs, Orpha codes play a crucial role in improving the diagnosis and treatment of rare diseases, including thyroid cancer 1.

Some key points about Orpha codes and their relation to thyroid cancer include:

  • Orpha codes are used to identify rare diseases, including rare variants of thyroid cancer
  • Medullary thyroid carcinoma and anaplastic thyroid carcinoma are examples of thyroid cancer variants with assigned Orpha codes
  • The use of Orpha codes can improve diagnosis, treatment planning, and research coordination for patients with rare thyroid cancers
  • Orpha codes can facilitate access to specialized care networks, clinical trials, and patient support groups focused on specific rare diseases.

It's worth noting that while the provided evidence discusses various aspects of thyroid cancer diagnosis and treatment, the most relevant information regarding Orpha codes is that they provide a standardized system for identifying and tracking rare diseases, including rare thyroid cancers 1.

From the Research

Orpha Code Explanation

  • The Orpha code is a unique identifier used to represent rare diseases in health information systems.
  • It was developed by Orphanet, a database of rare diseases, to improve the visibility of rare diseases in healthcare coding systems 2.
  • The Orpha code is used in addition to ICD10 codes for rare diseases that do not have a specific ICD10 code.

Connection to Thyroid Cancer

  • There is no direct connection between the Orpha code and thyroid cancer in the provided studies.
  • However, some studies discuss the management and treatment of rare types of thyroid cancer, such as papillary thyroid microcarcinoma (PTMC) and medullary thyroid microcarcinoma (MTMC) 3, 4, 5, 6.
  • These studies highlight the importance of appropriate coding and classification of rare diseases, including thyroid cancer, for healthcare planning and resource allocation.

Rare Diseases and Coding Systems

  • Rare diseases, including some types of thyroid cancer, are under-represented in healthcare coding systems 2.
  • The use of Orpha codes can help improve the visibility of rare diseases in health information systems and facilitate clinical research.
  • The adoption of Orpha codes can also help standardize the coding of rare diseases, making it easier to track and manage these conditions.

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Research

Papillary thyroid cancer.

Current treatment options in oncology, 2006

Research

Co-existence of Papillary and Medullary Thyroid Carcinoma: Reports of Three Cases.

Journal of the College of Physicians and Surgeons--Pakistan : JCPSP, 2022

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Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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