Using Nebraska state registry for research in Parkinson’s disease.
Danish Bhatti MD
Nebraska was the first State and still one of the only three states in U.S. which have a state mandated registry for Parkinson’s disease (PD). This registry was established 20 years ago with work and efforts by the faculty of Public Health and movement disorders Neurologist in Nebraska. This has accumulated a large amount of data over the last years of patients with PD through various sources. This included mandatory reporting by the physicians who have diagnosed patients and capturing data from various pharmacies across the state looking at prescribed medications typically used for PD and also other avenues such as patient self-reporting. Although a minimal amount of data set or information is collected for each patient. This data has been comprehensively maintained and updated annually over the last 20 years or so.
Even though data has been captured with minimal information is still highly useful and recently used to publish to very interesting articles. One of the study that we recently completed in collaboration with the College of Public Health at University of Nebraska Medical Center (UNMC) and the Movement Disorders division at the Department of neurological sciences. It looked at the most common comorbid conditions among PD patients seen between 2004 and 2012 in clinic and hospital. We looked for health problems are more common in patients with PD. This was done by linking the Nebraska Parkinson’s disease registry data along with another large database of hospital discharge information. We identified for comparison nearly 4000 Parkinson’s patients who were hospitalized and compared them with nearly 19000 non Parkinson’s patients who were discharged. Similarly, we identified 5000 Parkinson’s patients and 26000 non Parkinson’s patients from the databases in outpatient setting to compare with each other during the 8 years of review. We tried to match the two patient populations to be as comparable as possible by matching them with age at initial hospital admission or outpatient visit, gender distribution, county of residence using a random sampling method etc.
What we found out was that Parkinson’s patients who are hospitalized have more often dementia, mood disorders such as depression and anxiety, gastrointestinal disorders and urinary tract infection. We also noted that in outpatient PD had a higher risk of comorbidities of spondylosis or spine damage, genital urinary disorder, gastrointestinal disorder and again dementia. This highlights that certain conditions are more prevalent in PD and certain diseases are much less frequent in Parkinson’s patients, most notable was the cardiovascular diseases or heart problems. One other study that was previously published compared the database of pesticide and insecticide purchase per county with the incidence and prevalence of Parkinson’s disease in that county from the state registry and found certain counties showed a clear higher risk of Parkinson’s disease who were also higher purchasers of pesticide and insecticide. We will be working on developing other such research ideas of comparing the Parkinson’s disease registry database with other large databases in Nebraska to find commonalities and patterns that are useful. Similar comparisons can be done with the state register of Parkinson’s disease whether such large registries such as Well water database of Nebraska, the distribution of minerals, the occupation distribution and so on and so forth. And in future as we enhance and improve the registry database with a much larger collection of information then a far more useful and detailed research projects will be possible using the state registry of Parkinson’s disease.
This registry is currently being updated to enhance the amount of data collection taking advantage of the resources available in electronic medical records so that a much more comprehensive amount of data is available on each patient added to the registry thus making it far more powerful tool for providing for doing research in Parkinson’s disease and making it much more effective. We are actively involved in this process to identify the appropriate data elements to be captured through electronic medical record to be added to this registry for good studies in future.
