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This NOFO aims to improve access to, coordination of, and continuity of health care for individuals with thalassemia or sickle cell disease which will lead to a decreased occurrence of transfusion-related complications, improved quality and increased length of life. These health care improvements will result from a multi-faceted approach that includes (1) identification of patients, families, communities, and providers who will benefit from increased knowledge about therapeutic transfusions and their potential complications, (2) development and dissemination of materials that will increase understanding of the diagnosis and management of these blood disorders, and (3) collection of biological specimens from individuals with thalassemia or sickle cell disease. This NOFO builds upon findings from the work completed as part of CDC-RFA-DD14-1406. In particular, (1) the difficulty in identifying any thalassemia patient in the U.S. and their health care provider prior to medical complications manifesting, other than those born in states where the condition is a part of the mandatory newborn screening panel, (2) the lack of standardized practices across, and sometimes within, clinical care settings and blood banks for transfusions of patients with thalassemia or sickle cell disease, (3) the need for dissemination of evidence- or consensus-based guidelines about best practices for transfusions, and (4) the room for improvement in increasing blood donation from communities most affected by thalassemia or sickle cell disease.

This Funding Opportunity Announcement (FOA) invites research projects to improve understanding of the causes of high priority diseases in the United States and reducing/eliminating health disparities. Research is encouraged in the following high priority diseases within the scientific mission areas of the NIDDK: diabetes; obesity; nutrition-related disorders; hepatitis C; gallbladder disease; H. Pylori infection; sickle cell disease, specifically, studies in complications of sickle cell disease within the NIDDK mission areas; kidney diseases; urologic diseases; hematologic diseases, including studies in abnormal hemoglobin synthesis; metabolic diseases; gastrointestinal, hepatic, and renal complications from infection with HIV. Clinical trials are not permitted in response to this FOA.

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) seeks research to improve understanding of the causes of high priority diseases in the United States and to develop and test more effective interventions for reducing/eliminating health disparities. Research is encouraged in the following high priority diseases within the scientific mission areas of the NIDDK: diabetes, obesity, nutrition-related disorders, hepatitis C, gallbladder disease, H. Pylori infection, sickle cell disease, kidney diseases, urologic diseases, hematologic diseases, metabolic, gastrointestinal, hepatic, and renal complications from infection with HIV.

The purpose of this RFA is to encourage studies on reproductive health, fertility and fertility preservation/treatment options in patients born with a serious chronic condition who can now expect to survive into adulthood healthy enough to consider their reproductive health and fertility options. The underlying pathophysiology of diseases such as sickle cell anemia, thalassemia, and cystic fibrosis, among others, and/or the cumulative effects of their treatment, can compromise reproductive health. This RFA encourages teams of scientists with expertise in the realm of the particular disease and in reproductive health and fertility to work together to understand the effects of the diseases and/or their treatments on parameters of reproductive health, and to identify ways to preserve, protect, or treat and reproductive deficits in these patients.

This Challenge encourages college and graduate students to develop innovative information dissemination tools, instruments, or devices that help spread evidence-based information about SCD, so that people living with the disease can live better, healthier lives.

Through this NOFO, CDC plans to fund up to seven recipients for a one-year period of performance to participate in a rigorous course of activities to build capacity for a state-wide SCD surveillance system. CDC plans to fund up to five recipients to engage stakeholders, participate in web-based learning sessions, assess database linkages and infrastructure, and report out on all required capacity building SCD surveillance activities (Component A). CDC also plans to fund up to two recipients to provide technical assistance (Component B). The technical assistance will be provided through a series of web-based learning sessions, in-person meetings, in-state and cross-state relationship building, and ongoing communications to create the partnerships, data sharing agreements, and data storage system needed to successfully implement an SCD surveillance system. Applicants can apply for only Component A or Component B. This NOFO will improve and expand the current SCDC efforts by building the capacity of additional states to implement the program. Each state has a unique demographic makeup, distinct health care policies, and challenges related to access to care; all of these factors play a large role in the outcomes and experiences of individuals with SCD. By building capacity for additional states to implement SCDC, this NOFO builds the framework and a road map for recipients to gather unique data and conduct in-depth analyses to inform their SCD efforts and to compare and contrast SCD-related health care and health outcomes across states. Furthermore, the framework should have future utility for other parties interested in expanding their SCD surveillance.