Focus groups or talking circles are formed in community neighborhoods to facilitate input on common patient experiences. Insights on patient perceptions related to physician office visits and after visit self care are obtained in groups of 8-12 participants.
This study will recruit adolescents who are enrolled in a Teen Health Careers Program to participate in a community-engaged study. This study will seek to understand the barriers and facilitators to physical activity and nutritious foods throughout their daily lives. Adolescents will use take digital images to capture aspects of their daily lives using photography.
This is a study to develop a test for radiation exposure in the event of a nuclear event such as the detonation of a nuclear device or widespread radiation exposure. We will collect blood samples from a variety of different types of human subjects whose current medical status could possibly have an effect on the results of the test, such as trauma, burns, infections or a damaged immune system or young children. The goal is to ensure that these conditions do not affect the results of the test.
Protein S is a protein that is very important to the blood clotting process. When people don't have enough Protein S they run the risk of developing blood clots. This study is collecting samples from people who may have abnormal Protein S levels in order to develop a new way of checking the Protein S levels. This test is looking specifically for FREE Protein S. The free protein S is Protein S that is not bound or "tied up" and is therefore more ready to do its job in the clotting process.
Studies have shown that cancer patients may be at high risk for financial problems because of the cost of treatment. These financial problems can be stressful and sometimes might cause patients to avoid or refuse treatment. We want to measure how often financial problems happen in patients with colorectal cancer, using questionnaires that collect information about finances and quality of life. In order to get a full picture of the financial impact of colorectal cancer, we also want to collect credit reports for all patients in this study.
Transforming health care and outcomes for children with rare diseases is difficult within the current health care system. There is great variation in care delivery, inadequate and slow application of existing evidence, and ineffective use of available data to generate new knowledge. Individual care centers have inadequate numbers of patients for robust learning and improvement. In order to redesign the system, changes must take place at multiple levels, including the patient and family, clinician, practice and the network. The purpose of this project is to design, develop, and test further refinements to an improvement and research network focused on HLHS, the most severe congenital heart defect, and to use a registry to simultaneously improve clinical care, redesign care delivery systems and to conduct quality improvement, health services, outcomes, and comparative effectiveness research. The purpose of this initiative, specifically, is to improve care and outcomes for infants with HLHS by: 1) expanding the established NPC-QIC national registry to gather clinical care process, outcome, and developmental data on infants with HLHS between diagnosis and 12 months of age, 2) improving implementation of consensus standards, tested by teams, into everyday practice across pediatric cardiology centers, and 3) engaging parents as partners in improving care and outcomes. We utilize a quality improvement methodology, known as the adapted learning collaborative model, which expedites the implementation of tools and strategies that facilitate changes such as systematic care coordination, cardiovascular monitoring, and nutritional monitoring into every day practice. The NPC-QIC registry is used to document the impact of these changes on various care processes and outcomes (e.g., mortality rate, readmissions, and weight gain).
A majority of patients diagnosed with cancer are over age 65, yet most cancer treatments are developed in a younger population. Older cancer patients are more likely to experience side effects. There is no standard way to treat chemotherapy side effects in older patients. A Geriatric Assessment (GA) can be used to predict who is at risk for side effects but there is no standard way to decrease this risk. Also, there is not agreement on how information from a GA can be used to develop ways to prevent or treat side effects.
The purpose of this study is to find out if the GA can help improve and develop a standard approach for reducing and/or preventing chemotherapy side effects in older cancer patients. The GA is intended to determine an older patient's level of independence taking into account health conditions, physical performance (walking, leg strength, and balance), nutrition, social support and memory. Several tests as well as questionnaires are used. The combined results establish what is called a patient's functional age, which may be quite different from the actual age. Functional age can help better predict a patient's tolerance of and likely response to cancer treatments as well as provide other important age-related information not routinely captured by cancer doctors. If you decide to participate in this study, you will receive the GA.
Structured life reviews are a series of interviews during which the interviewer asks questions about a person's life experiences from birth to the present. During this study, we will conduct structured life reviews with adults with sickle cell disease. We will ask questions about life transitions and health care utilization.
The Systemic Lupus Erythematosus (SLE) in Gullah Health, or SLEIGH, study is an observational study enrolling African Americans from the Sea Island communities of South Carolina and Georgia. We are enrolling patients, family members of patients, and unrelated community members. SLE is a potentially severe disease that can affect the entire body. SLE is more common in African Americans than Caucasians. The main purpose of this study is to find genes that, along with factors from the environment, result in the development of SLE. Volunteers in SLEIGH will be asked to answer questions about their health and have blood and urine collected for tests. After the first visit there may be one additional visit 2 or more years later. This is not a drug study.