We are writing to you with very important news. In collaboration with the United Leukodystrophy Foundation (ULF), we are thrilled to announce that ADLD now has a designated ICD-10 code: G90.B. This marks a significant milestone in the journey toward better diagnosis and treatment for ADLD patients.
Why is this important?
- Advancement in Natural History Studies (NHS): The new code enables more precise patient categorization into groups when testing new treatments for ADLD. An NHS can act as a control group, which helps establish a baseline understanding of ADLD progression. In the event that a drug for ADLD is available in the future, this will be critical for helping physicians and scientists understand how well the drug is helping ADLD patients. Given how rare ADLD is, this a crucial advantage given that ethical considerations often rule out placebo-controlled trials for rare diseases like ADLD.
- Optimized Clinical Trials: Specific ICD-10 codes streamline patient recruitment and data collection, thereby accelerating the timeline for future clinical trials and ultimately expediting access to new therapies.
- Faster Diagnosis: The specific ICD-10 code facilitates quicker identification and diagnosis of ADLD, reducing treatment delays and increasing the accuracy of population studies. This is particularly important for medical records from now forward.
- Enhanced Treatment Plans: With a dedicated code, healthcare providers can formulate more targeted treatment plans, relying on a standardized diagnostic criteria specific to ADLD.
- Quality of Life: Quick diagnosis and individualized treatments lead to a significant improvement in patients’ quality of life.
We strongly encourage all our subscribers and their care teams to start using this new ICD-10 code immediately. It is important to note that this code is meant to augment, not replace, existing diagnosis codes. For detailed information, you can visit the official ULF announcement here.
Next Steps:
• Educate Your Care Team: Share this information with your healthcare providers as soon as possible.
• Update Medical Records: Ensure that your medical records reflect this new ICD-10 code.
This monumental development is a testament to what we can achieve through collaborative efforts. We extend our gratitude to ULF and all contributors who made this possible. Thank you for your continued engagement and support.