Why Rare Disease Registry and Its Benefits

 

No unifying definition of rare disease has been given till date, but in the US, it is described as a condition that affects less than 2,00,000 individuals in the United States. Registry of rare diseases is done to ensure that clinicians, researchers, and drug manufacturers have access to 'The Right Data at the Precise Time,' powered by the patients' data. The technology platform to Rare Disease Registry includes technology to back four fundamental objects. These are-

·         Accelerating Diagnosis

·         Scaled and Efficient Patient Owned Data Collection

·         Increased Data Access and

·         Broad Analysis

8 steps to a rare disease registry

The eight steps described here illustrate how a patient organization raises its visibility & garner attention from academics and pharmaceuticals to examine their disease.

1.       Design your registry

2.       Launch the simple population registry

3.       Customize the registry to record longitudinal data

4.       Engage academic researchers

5.       Engage pharmaceuticals

6.       Run clinical trials

7.       Get EMA authorization

8.       Get HTA approval

Benefits of registering Genetic Disorders Rare:

Here are three significant ways that patients who're registering Genetic Disorders Rare can be benefitted.

Registries can improve patient care

Rare disease patient registries are websites where patients experiencing particular rare diseases can express their stories. The patients can create surveys that systematically carry their symptoms, medications, and outcomes history. Researchers on getting such data can analyze the registered information and learn which treatment seems to get the best results in which conditions. Researchers share those results with the patients so that they can get better treatments.

Registries amplify your voice

While reviewing the patient's history of symptoms, treatments, and outcomes, several patient registries urge researchers to give their perspective on relevant topics. Sharing your viewpoint is remarkably influential. Rare disease registry backs the research funding agencies, drug manufacturers, regulatory bodies, and patient organizations to assist you and your interests best.

Registries enhance the risks of drug development

Drug development is a challenging, time-consuming, and costly procedure. When a drug company discovers that a rare disease community previously has rare patient registries with useful data, it will have many potential savings.

Conclusion

Patient registries are significant as it has lots of potential benefits for rare disease communities. Being registered can even help the patients to cure their diseases. For more information visit here:-
https://rare-x.org/rare-x-data-platform-and-services/