In the past decade, rare disease patient registry software has become an integral tool for health care professionals helping patients. Patient registries are now recognized all over the world as a priority by health care organizations and researchers, particularly for fighting rare diseases. These registries help clinicians learn more about patients suffering from rare diseases, the symptoms, side effects and the success of medications used.
There are numerous ways patient registries can be beneficial in researching, treating, fighting, and understanding rare diseases, including the following:
Drug Development and Rare Disease Patient Registry Software
Patient registry software drastically helps in the research and development of drugs for rare disease. Indeed, drug development is expensive, time-consuming, and hard when it comes to rare diseases. A rare disease community with a patient registry with relevant patient information can help a drug producing and research company save millions and increase the likelihood of drug development.
Moreover, the rare diseases patient registry also makes it easier for researchers to recruit patients to participate in clinical trials, making it less expensive for researchers and drug companies to take a step further in drug development.
Highlight the Patients’ Issues
Aside from adding the patients’ medical history, the symptoms of rare diseases, the medication and their outcomes, patient registries also highlight the issues patients have been experiencing throughout the treatment plan. This allows researchers and health care professionals to get detailed and accurate information on rare diseases.
Patients and their health care providers can add details about the issues being faced and ways they feel things can improve. This allows researchers, funding agencies, regulatory agencies, and drug companies to understand their problems and find ways to address them through research.
Improvement in Patient Care
Digitalized and modern rare disease patient registries also allow patients suffering from rare diseases to share their symptoms, opinions, and story with the health care world. The details entered by health care providers or patients themselves systematically capture the history of patients’ symptoms, treatments, side-effects, and benefits to be analyzed by relevant health care professionals and researchers.
Researchers can access this information and analyze the data to understand rare diseases and to determine the best treatment options that offer the best possible solutions. The results can then be shared with the patients, their health care providers, their caregivers, and other community members to enhance the patient’s overall care and well-being.
The right patient registry software solution can help design and initiate clinical trials for rare disease research and drug development. It can serve as a tool for capturing information from the patients suffering from rare diseases and their healthcare providers on unique requirements and targeted needs to improve the design of the clinical trials. The National Center for Advancing Translational Sciences (NCATS) is a center established by the National Institutes of Health (NIH) that helps to transform “the translational process so that new treatments and cures for disease can be delivered to patients faster.” They have established “The Rare Diseases Registry Program (RaDaR)“, which is a resource that provides the rare diseases community with “easily accessible guidance on how to set up and maintain high-quality registries”.
Our patient registry solution helps you design and establish a custom rare disease patient registry to enhance overall patient care by offering accurate information and data to health care organizations and drug companies. Schedule your free demo today or get in touch if you have any questions.
