There are registries for most diseases with specific codes that correspond to each disease. When doctors want to type in your diagnosis, instead of spelling it out fully, they can simply select a corresponding diagnostic code that is universally understood. This simplifies the record-keeping process.
The reason that registries are important in rare diseases such as fetal and neonatal alloimmune thrombocytopenia (FNAIT) is the same reason they are important in more common diseases: they help researchers track disease spread and inform decision-making for doctors.
Prevalence and resource allocation
Without an accurate record of diseases, policymakers remain blind to just how prevalent a particular disease is. In the absence of disease registries, policymakers can only guess at a disease’s spread and effects. This is undesirable because it means that funds and resources cannot be properly allocated to areas that need them most.
This problem is amplified among diseases that are considered rare. In these cases, public health officials need to know how prevalent the disease is across the country to allocate the necessary personnel and treatments. Without proper record-keeping, these decisions simply cannot be made accurately.
Read more about FNAIT testing and diagnosis
Furthermore, researchers rely on registry data to quantify risk factors and develop screening protocols. Every intervention initiated to prevent a rare disease from occurring needs to be justified. It is often rare disease registries that allow matters surrounding these issues to be decided one way or another.
Treatment and collaboration
Modern treatment guidelines are heavily influenced by the relative rarity of a disease. For example, some locations may not have doctors familiar with the disease; as such, treatment protocols must be adjusted accordingly, perhaps by recommending therapies that are more widely available first before the patient can be transferred to a place of care in which the most potent therapies for the patient’s condition can be found.
Another area in which rare disease registries may be helpful is when researchers seek to conduct clinical trials. For this to happen, they first need to know about the relative prevalence of a disease in a given country. This will inform different factors that affect the trial, such as patient selection and establishing research centers.
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