Daily Rules, Proposed Rules, and Notices of the Federal Government
Periodically, the Health Resources and Services Administration (HRSA) publishes abstracts of information collection requests under review by the Office of Management and Budget (OMB), in compliance with the Paperwork Reduction Act of 1995 (44 U.S.C. Chapter 35). To request a copy of the clearance requests submitted to OMB for review, email
The following request has been submitted to the Office of Management and Budget for review under the Paperwork Reduction Act of 1995:
In 2006, the MCHB Genetic Services Branch (GSB) awarded funding to a National Coordinating Center (NCC). The NCC was established to: (1) Collect, coordinate, monitor, and report on best practices and findings regarding the activities of the demonstration program; (2) identify a model protocol for eligible entities with respect to the prevention and treatment of Sickle Cell Disease; (3) identify educational materials regarding the prevention and treatment of Sickle Cell Disease; and, (4) prepare a final report on the efficacy of the demonstration program based on evaluation and quality improvement (QI) findings.
To achieve the goals/objectives of the NCC, the National Initiative for Children's Healthcare Quality (NICHQ) and partners are facilitating the Hemoglobinopathy Learning Collaborative (HLC). The HLC includes grantee teams funded from the SCDTDP and the Sickle Cell Disease for Newborn Screening Program (SCDNBSP). The HLC uses a process known as the Model for Improvement, which is a widely used approach to QI in health care settings. The Model for Improvement utilizes a structured process that asks grantee teams, who hereafter will be referred to as improvement teams, to build on small tests of change in their health care setting, while providing monthly reporting on measurements. The proposed QI Data Collection and reporting system is an integral component of this model.
The QI Data Collection strategy will provide an effective and efficient mechanism to do the following: (1) Assess the services provided by grantees under the SCDTDP and monitor and drive improvement on quality measures; (2) collect, coordinate, and distribute data, best practices, and findings from network sites; (3) refine a common model protocol regarding the prevention and treatment of sickle cell disease; (4) examine/address barriers that individuals and families living with sickle cell disease face when accessing quality health care and health education; (5) evaluate the grantees' performance in meeting the objectives of the SCDTDP; and, (6) provide HRSA/Congress information on the overall progress of the program.
The proposed data collection and entry forms are as follows: (1) Participant Profile Form, (2) Acute Care Visit Form, and (3) Ambulatory Care Visit Form.
All information will be collected via medical chart review. Data will be entered directly into a secure web-based data collection tool, Research Electronic Data Capture (REDCap). The data entered into REDCap will be analyzed via a custom measurement generator that will calculate and export the QI
The annual estimate of burden is as follows:
Written comments and recommendations concerning the proposed information collection should be sent within 30 days of this notice to the desk officer for HRSA, either by email to