Patient Registries represent a unique and powerful method for the collection of data. Registry software is commonly used to capture observational epidemiologic data. However, patient registries are also implemented by pharmaceutical, medical device, biotechnology, academic and private healthcare organizations. Patient registry programs are also utilized by many non-profit foundations and advocacy groups who want to take a larger role in supporting disease understanding and outcomes associated with different treatment modalities. The Cystic Fibrosis Foundation has been collecting registry outcome data since 1986.
There are many examples of the how registry programs benefit patients, researchers, and the healthcare community at large. When evaluating the creation of a registry program, key questions should center around what the program will ultimately deliver. The concept of “begin with the end in mind” is a core principle that should direct program development.
As discussed in our blog post from July 28th, a great model to help your team gain clarity on your end point vision is creating a registry “wheel”. The concept of the wheel allows your team to become clear on all your different audiences’ needs for data, and interpretation of the data you obtain. The process creates uniformity of focus and establishes a singular “hub” by which end results and benefits can be fully realized.