Monday, November 25, 2024
11/25/2024
PROJECT ABSTRACT SUMMARY Hereditary bleeding disorders continue to cause significant health-related and quality-of-life morbidities and are a risk factor for early death. Beginning in 1993 and expanding to the entire United States Hemophilia Treatment Center Network (USHTCN) in 1998, in response to the catastrophic human immunodeficiency virus (HIV) and hepatitis virus contamination of the blood and factor concentrate supply, the Centers for Disease Control and Prevention (CDC) and the USHTCN have collected surveillance data focused on the complications of transfusion-transmitted infections, bleeding-related joint disease, and mortality, culminating in the seminal publication demonstrating a decreased risk of death among men with hemophilia who received their care through federally-supported hemophilia treatment centers. Since 2012, the American Thrombosis and Hemostasis Network (ATHN) has been the recipient of CDC funds to continue this critical surveillance project. In partnership with leadership of the USHTCN as well as public health experts within the CDC’s Division of Blood Disorders, Community Counts is the public health monitoring program gathering and sharing information about common health issues, medical complications, and causes of death affecting people with bleeding disorders receiving care through the USHTCN. In response to CDC-RFA-DD20-2004: Public Health Surveillance for the Prevention of Complications of Bleeding Disorders, ATHN proposes remaining the coordinating center with the goal of continuing the Community Counts project utilizing ATHTN Systems to gather data from USHTCN member centers, to transfer the data to CDC, and to analyze and disseminate pertinent findings. ATHN proposes maintenance of the three components of Community Counts: the Population Profile (describing characteristics of patients receiving care through the USHTCN), the Registry for Bleeding Disorders Surveillance (gathering detailed, longitudinal information on the characteristics, diagnoses, risk factors, and complications of patients receiving care through the USHTCN), and Mortality Reporting (tracking the characteristics, diagnoses, and causes of death of patients with bleeding disorders receiving care through the USHTCN). However, due to the world-wide SARS-CoV-2/COVID-19 pandemic, face-to-face visits at USHTCN sites have come to a halt, negatively impacting the ability of our USHTCN collaborators to collect surveillance data and biologic specimens. Not until public health officials in every state begin to lift stay-at-home orders and physical distancing guidance do we expect data submission to match historic levels. In ATHN’s response, the strategy most updated from the previous five-year funding cycle focuses on data quality evaluation and improvement. The quality of data entered by USHTCN staff has undergone continual and significant improvement since the 2012 roll-out of Community Counts. During this funding cycle, ATHN, in collaboration with USHTCN sites and CDC, will intensify the focus on further developing and implementing processes to ensure collection of accurate data, including determining the feasibility of implementing cross-form point-of-entry/submission logical validations with our data collection system. Continuing Community Counts with ATHN as the coordinating center will ensure the ongoing contribution of uniform data from patients to researchers, clinicians, public health experts, and all bleeding disorder community stakeholders, with the ultimate goal of monitoring treatment and outcomes to reduce and prevent the complications of bleeding disorders.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).
