Unraveling the Long Road of Alzheimer's Disease

There is a huge gap in understanding the journey of Alzheimer's disease and related dementias (ADRD). It takes 20 to 30 years for these conditions to fully develop. This makes it tough to track the entire process. Most studies focus on specific groups, which might not reflect real-life experiences of patients. To tackle these issues, a new approach was taken. The ABOARD Cohort was created. It's a national effort to collect data from patients. The goal is to study the disease's progression using information directly from patients and their medical records. The ABOARD Cohort aims to do several things. First, it wants to understand the disease's journey better. It uses patient-reported outcome measures (PROMs) and medical data. This means it looks at how patients feel and what their doctors find. Second, it links to other data sources. This helps to get a fuller picture. Third, it acts as a central hub. It helps with research, tries out new healthcare ideas, and keeps track of the disease nationwide. The design of the ABOARD Cohort is quite smart. It's set up to handle a lot of data. This is important because ADRD affects many people. The first 10, 275 participants have already joined. Their information is being used to test the system. So far, it seems to be working well. The hope is that this will lead to better care and treatments for patients. One of the big challenges is getting enough people to join. It's important to have a diverse group. This way, the results can apply to many people. Another challenge is keeping up with the data. It's a lot of information to handle. But the team is ready for the task. They have the tools and the know-how to make it work. The ABOARD Cohort is a big step forward. It's a chance to learn more about ADRD. It's also a chance to improve care. But it's not just about the data. It's about the people behind the data. It's about their stories and their struggles. It's about finding a way to make their lives better. The ABOARD Cohort is a tool. It's a tool to help us understand and fight ADRD. It's a tool to help us make a difference.