In the United States, there are 65 hospitals and centers designated at Huntington’s Disease Society of America (HDSA) Centers of Excellence, which all offer comprehensive care for patients and families suffering from HD. Many of the sites also offer observational and clinical trials for HD research. Georgetown University’s Huntington’s Disease Care, Education and Research Center (HD CERC) not only supports multiple clinical research trials and observational trials, but also has recently added an Outreach Coordinator to specifically address any unmet needs of the community. Through a community needs assessment and an optional research survey, we will explore the relationship between clinical care and research participation. Site staff used an informal survey that could be taken in person at clinic or virtually after completing the needs assessment to gather scaled and semi-structured feedback from the patient population regarding past participation in HD research. We then compared historic clinic visit frequency, genetic testing status, and participation in the EnrollHD study at Georgetown University. Through the comparison of this data, this project will explore the role of clinical trials, community outreach, and support opportunities in the amount of patient care provided to HD patients at the HD CERC. This project will also discuss patient retention at the Center through the lens of patient interaction with clinical or observational trials, as well as personal contact with the Outreach Coordinator.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.