As a part of Phase I funding CAPriCORN was tasked with developing disease cohorts on which to conduct research. CAPriCORN was able to develop five cohorts around different diseases: Weight Management, two common diseases (Asthma and Amenia), and two rare diseases (Recurrent Clostridium difficile and Sickle Cell Disease). Each cohort committee has begun recruitment and are in the process of developing innovative methods for doing research and recruitment. CAPriCORN’s goal has been to characterize an estimated five million unique patients around these cohorts. CAPriCORN is already approaching one million unique, de-identified, and characterized patients.
The Anemia Cohort Committee has been able to identify patients with anemia from various data sources. A survey was developed by the Anemia workgroup to measure fatigue among patients and to follow-up 30 days after hospitalization. Over 400 patients have been fully characterized for patient reported outcomes at the University of Chicago site. Results suggest promising relationships between transfusion and reduction of fatigue among patients who have low hemoglobin levels and high levels of fatigue.
The Asthma Cohort Committee has successfully identified children and adults with asthma from the electronic health records. The Asthma group has engaged community partners of the Respiratory Health Association and Chicago Asthma Consortium in the development of a survey instrument to better describe asthma in the community. This cohort is obtaining information to 1) evaluate demographic and health characteristics associated with asthma control and high healthcare utilizers and 2) compare characteristics of asthma disease and demographics between obese and non-obese subjects with asthma. This cohort is in the process of recruiting and surveying 1000 asthma patients. The Asthma Cohort plans to submit proposals to PCORI for their large pragmatic trials.
The Recurrent Clostridium difficile Infection (RCDI) committee has been able to identify RCDI cases using electronic health records and developed a survey instrument to collect data on patient symptoms, experiences, and impact of having had RCDI, the first survey of its kind. This cohort will yield at least one publication describing the impact of PCDI on patients. The Peggy Lillis Memorial Foundation, the only national advocacy group devoted specifically to CDI, is a partner in this work. The RCDI committee has discussed projects to examine the long term impacts of RCDI on healthcare utilization and costs, and development of chronic conditions.
The Sickle Cell Disease Cohort Committee has had success with community engagement and submission of new projects. This cohort has strong community engagements with the Sickle Cell Disease Association of Illinois (SCDAI) and Have a Heart for Sickle Cell Anemia Foundation (HAH) at the state and local level, and the Sickle Cell Disease Association of America (SCDAA) at the national level. The cohort submitted three proposals to PCORI, and two were invited to participate after the Letter of Intent. This cohort is also characterizing an adolescent and young adult sub-cohort who demonstrates high rates of morbidity, mortality, and healthcare needs for specific interventions.
This cohort has successfully been able to identify and characterize adult and pediatric patients across our institutions. This cohort will be participating in the PCORnet Obesity Observational Research Demonstration Projects, development of a proposal in response to long-term outcomes of bariatrics surgery, and development of a template and associated processes to facilitate future collaborations and optimize our ability to quickly and efficiently respond to requests for CAPriCORN participation in external studies. This cohort submitted applications that propose to examine obesity-related outcomes. The cohort plans to develop a proposal to test the effectiveness, in real-world settings, of a simple provider prompt to implement a “small change” approach to the prevention of excessive weight gain during appropriate patient encounters.