About iNTD and How It Can Benefit Patients With AADC Deficiency
The International Working Group on Neurotransmitter Related Disorders, known as iNTD, is an organization that seeks to raise awareness and improve the treatment of rare neurological conditions, including aromatic l-amino acid decarboxylase (AADC) deficiency.
Here is more information about the iNTD. You can learn about its goals, and how its work can help people with AADC deficiency.
What is the iNTD?
The iNTD was founded in 2013 with the aim of improving the care provided to patients with rare neurological diseases. The group works to increase clinical and scientific collaborations to improve health care. Located in 26 countries across Europe, North America, Asia, and the Middle East, the iNTD currently consists of 42 medical centers.
One of its goals was to create a registry to gather more information about how different neurotransmitter diseases progress, how they affect patients’ quality of life, and how individuals with the same disorders respond to different treatments.
How can it help patients with AADC deficiency?
Despite the disease being extremely rare, AADC deficiency patients were initially the highest represented group in the registry. In fact, 25% of all patients in the registry belonged to this group. A big proportion of these patients came from a previous registry called JAKE, which had been started and hosted by researchers at the University Children’s Hospital in Zürich, Switzerland.
The AADC Research Trust, an AADC parent organization, also helped to promote the registry.
Using the information in the registry, the iNTD was able to publish consensus guidelines for the diagnosis, management, and treatment of people with AADC deficiency. The information contained in this document can prove invaluable for physicians in diagnosing and treating AADC deficiency. The study appeared in an open-access journal so that the information is widely available.
The group also used information from the registry and results from a questionnaire to find out more about disease symptoms and patients’ developmental outcomes. This data can be extremely useful for doctors and researchers who want to learn the most common symptoms of the disease and the effectiveness of various treatments.
Last updated: Feb. 24, 2021
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