IPF, or Idiopathic Pulmonary Fibrosis, is categorized as a rare disease that affects approximately 5 million people worldwide. It is thought to more prevalent among men than women. IPF is a lung condition that deteriorates the lungs and affects the efficiency of breathing. As a rare and orphan disease, it has a poor prognosis, due to which its treatment is decidedly difficult. In light of this, more medical researchers are tilting towards the role of a rare disease patient registry in treating IPF.
The Challenge of IPF Treatment
IPF is a crippling disease with a life expectancy of just 2-5 years following diagnosis. Due to a limited pool of information available regarding this disease, it can be quite difficult to timely diagnose and treat. Since the average life expectancy is also very low, there is a dire need for an effective treatment for IPF.
IPF is a progressive condition that only worsens with time as the lungs stiffen and scar over time. Currently, without a lung transplant, there is no way a patient will IPF will be able to survive.
Considering the severity of the situation, there is an immediate need for effective diagnosis and treatment. There is a severe lack of specialist teams who can diagnose and treat this rare disease across the world. Due to this, the patients are not even able to get the best treatment in their last years battling this disease. The bigger challenge with IPF is that the time span between diagnosis and life expectancy is very low, even in comparison to other rare diseases.
Role of Rare Disease Registry In Treating IPF
Considering the poor diagnosis of this disease, a rare disease registry (RDR) can help provide a better understanding of the course of the disease and its behavior. An RDR will also facilitate the identification of geographical variations in diagnostic patterns that will help establish improved patient outcomes and practices.
In order to establish a rare disease registry in treating IPF, the registry needs to have a clear objective. The RDR for IPF can focus on the long-term efficacy of antifibrotic medication in all patients, as well as those who are battling a more severe condition.
Since patient registries have the power to collect and accumulate data on thousands of patients all around the world, it will help medical researchers and healthcare professionals discover new clinical variables and the ability to authenticate or disprove findings gathered from smaller groups. Even with different rare disease registries regarding IPF, their results can be gathered to gain greater insights into this disease.
The Best Rare Disease Patient Registry
The patient registry you use is of immense importance, especially in treating a disease like IP, which has a short life expectancy. This is why you require a patient registry software solution that would enable different groups to collect, organize and collaborate data to take productive steps towards the ultimate goal of establishing an appropriate and timely diagnosis and treatment for IPF.