The importance of patient registries has been established to improve the quality of healthcare and improve medical research. A kind of registry is the rare disease registry. Rare diseases affect less than 200,000 people in the U.S. or up to 5 patients for every 10,000 people in the EU. It is harder to find a suitable treatment plan for rare diseases due to the lack of limited data available. This stresses the need for rare disease registry funds to establish more rare disease registries for helping patients.
Purpose of a Rare Disease Registry
If you want to secure rare disease registry funds, you need to exact the purpose of the registry. What is it targeting? Why is it even required? What will this specific rare disease registry achieve? All these questions will help stakeholders invest to initiate a rare disease registry.
Research shows that patients of a specific rare disease often share a genetic foundation. These people may be scattered over the United States, or even in other parts of the world. There is a need to connect these rare disease patients, their doctors, and families so they can collaborate and learn about the condition, and possibly explore other, more viable treatment options and drugs.
Stakeholders like pharmaceutical companies might be interested in developing drugs for a rare disease. In order to do that, they will need a patient base to evaluate orphan products, drugs, medical equipment, and devices to see what works and what doesn’t.
Where Do You Get Rare Disease Registry Funds?
There is a dire need for more rare disease registries. In Europe, there are approximately 5000 to 7000 different rare diseases with just 700 rare disease registries targeting a number of these conditions. This lack of rare disease registries may be cited to the lack of initiative and low funds because a need is clearly present. This brings us to the all-important question; how do rare disease registries get funded?
Government Funded Research Projects
Realizing a lack of efficient clinical trials for smaller populations suffering from rare diseases, the European Union created the ASTERIX project. Like this, there are several government-funded research projects that are dedicated to the development of rare disease registries with the sole aim to provide better treatment to children and adults suffering from rare diseases.
There are several NGOs that work towards better healthcare. Some of these targets rare diseases and take the initiative of setting up rare disease registries. One such Non-Profit organization is NORD, The National Organization for Rare Diseases. NORD recently ordered the development of 10 rare disease registries! It receives funding from organizations like Shire.
The pharmaceutical industry may have a personal interest in tracing the natural history of a rare disease, so they are in a better position to create and develop drugs and orphan products. To do this, they may sponsor a rare disease registry targeted toward drug development for a rare disease.
There are many stakeholders that will sponsor rare disease registries, whether for their own good or for the public good. It is important that rare disease registries use flexible and secure patient registry software to attract higher patient participation. With more rare disease registries, there will be a significant advancement and improvement in treatment plans and drugs for rare disease patients.