A rare disease patient registry is a repository of data about individuals who have a rare condition or diagnosis. The aim of rare patient registries is to help medical and other healthcare facilities practice better patient management that will significantly improve patient outcomes as well.
Phases of Rare Disease Registries
Rare disease registries have several benefits, and the phases involved will ultimately help patients battling rare diseases. To maintain a rare disease registry, you would require the contact and demographic information of patients dealing with said disease. You would also need to collect and record information regarding the patient experience as well as patient-reported outcomes. To enhance the understanding of the rare disease, you would also need to collect clinical trial data.
Challenges to Rare Disease Patient Registries
While rare disease patient registries are extremely useful, their maintenance is also fraught with many challenges. This is why the number of rare disease registries remains surprisingly low. This guide will talk about some of the common barriers to maintaining effective and useful rare disease registries.
A rare disease is qualified as any condition or illness that has a low prevalence in the world. But since rare diseases can be potentially life threatening, improved patient treatment plans are much needed. To do that, you need relevant information in the form of rare disease registries.
But this is the biggest impediment to rare disease registries. Given the small segment of the population it affects, there is limited scope of adequate data. There are a limited number of case reports, which makes it harder to understand the natural history of these diseases too. Moreover, the small sample size for clinical trials makes it harder to evaluate patients’ treatment outcomes.
Another big problem in maintaining rare disease patient registries is the common incidence of inaccurate diagnoses, where the disease would be mistaken as something else, further diminishing the data available for assessing patient outcomes.
In addition, some inaccurate diagnosis also means that medical practitioners aren’t able to identify that the patient is dealing with this specific rare disease. Once again, this exacerbates the problem of insufficient data and so, lack of proper diagnosis is a real challenge in maintaining rare disease registries.
How to Deal With These Challenges?
Due to these knowledge gaps in the understanding of most rare diseases, rare diseases patient registries have become even harder to maintain, despite the fact that they are required. These challenges can be overcome with better coordination and infrastructure for the collection and management of data. To do this, you would need greater and more dedicated research initiatives as well as funding.
Costs and efforts are needed to maintain any patient registry. However, it is an undeniable fact that this becomes even more imperative in the case of rare disease registries. Data shows that global awareness about rare diseases and accurate identification of rare disease patients is needed to maintain rare diseases registries and bring about a much-needed change in healthcare systems catering to such patients. To learn more about how a Clinical PURSUIT registry can help you develop an effective rare disease registry – Schedule a one-on-one free demo today!