Hemoglobinopathies Monitoring

Public Health Webinar Series on Hemoglobinopathies

Hemoglobinopathies is the medical term for a group of blood disorders and diseases that affect red blood cells. These disorders include both sickle cell disease (SCD) and thalassemia.
Hemoglobinopathies monitoring means determining the number of people with these conditions and how they are affected. By studying the number of people with hemoglobinopathies over time, we can find out if the number is rising, dropping, or staying the same. We can also compare the number of people with these conditions in different areas of the country and among different groups of people.
Four kids laying with their heads together

Four kids laying with their heads together

Monitoring can help researchers and health care providers learn about the number of people living with SCD and thalassemia so that we can better understand how these conditions affect their health.
Currently, the CDC is conducting two activities that focus on SCD and thalassemia: the Registry and Surveillance System for Hemoglobinapathies and Thalassemia Data Collection Project.

RuSH Overview

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Registry and Surveillance System for Hemoglobinopathies (RuSH)

In 2010, the Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project was implemented to collect state-specific, population-based data on people with SCD and thalassemia. The pilot is being conducted in collaboration with the National Institutes of Health’s National Heart, Lung, and Blood Institute

Currently, seven states are funded to participate in data collection: California, Florida, Georgia, Michigan, New York, North Carolina, and Pennsylvania
The pilot project is designed to assess the possibility of developing a national surveillance system to collect information about people with SCD and thalassemia. The information collected will assist in determining how many people are affected by these conditions.

Data Collection

The project includes the collection of different types of information. Each state public health department routinely collects data that provide information about the people who live in that state.
State-based information often includes:

Vital records—births, deaths, pregnancies, and pregnancy outcomes

Immunization records—vaccinations or shots given to prevent diseases

Newborn screening results

Health care statistics—hospitalizations, emergency room visits, and other sources of medical care

This information is used by state health departments to assess the health care needs of people who live in various communities. Having state-based information about hemoglobinopathies will help determine who is affected by conditions such as SCD and thalassemia.
It is anticipated that surveillance data collected will:

Highlight the number of new cases (incidence) of SCD and thalassemia each year in each state

Provide estimates of total cases(prevalence) of SCD and thalassemia

Provide information on trends in medical care

Provide information about complication and death rates

Provide state-specific information to assist with planning public health interventions (i.e. services, health promotion campaigns, health education, and training)

Serve as a baseline to evaluate the effectiveness of existing interventions

Project Goals

Determine How Many People Have SCD and Thalassemia
Data from the project will provide accurate estimates of the number of new cases (incidence rates) and total number of cases (prevalence rates) of people with SCD and thalassemia. The pilot program will include people who have not been identified through newborn screening, such as immigrants and those born before newborn screening was implemented. This information can help target communities in need of additional resources and services.

Increase Knowledge and Awareness
Basic knowledge and awareness of SCD and thalassemia is lacking among the general public and those affected. CDC will partner with community-based organizations, academic institutions, and clinical care centers to develop education and training tools tailored for people living with SCD and thalassemia and those who care for them, including their families and health care providers.

Demonstrate the Value of Surveillance Data
- Describe the needs of people living with SCD and thalassemia in specific communities.
- Identify areas for improvement in delivery of health care for children and adults with SCD and thalassemia.
- Empower stakeholders with credible information to effectively advocate on behalf of people with SCD and thalassemia.
- Evaluate the effectiveness of current programs and interventions addressing SCD and thalassemia related issues.

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RuSH Medscape Video

Learn about the Registry and Surveillance System for Hemoglobinopathies (RuSH) initiative.

RuSH Strategies from the Field: Health Promotion [PDF - 5.01mb]
RuSH Strategies from the Field: Data Collection [PDF - 4 mb]

The RuSH Strategies from the Field reports were created to showcase some of the unique ways in which the seven states implemented activities designed to meet programmatic goals of RuSH. The Health Promotion report highlights one of each state’s many programs featuring information about resources needed to operate or replicate the activity, intended benefits and outcomes, and lessons learned. The Data Collection report highlights a particular aspect of each state’s data collection process, including information about resources, lessons learned and sustainability. To learn more about the RuSH project access the Medscape video, featuring Dr. Althea Grant

Thalassemia Data Collection Project

The availability of safe blood and blood products is an important public health issue. The CDC currently monitors blood product safety for people with thalassemia through the Thalassemia Data Collection (TDC) Project. This project focuses on people who receive care at CDC-funded thalassemia treatment centers (TTCs). Currently, seven TTCs are participating in the TDC Project. The project collects health information that will provide a better understanding of how to reduce or prevent the complications of thalassemia.
Boy on his mom's back

Blood safety monitoring is essential because it helps detect known and emerging infections that could be transmitted through frequent blood transfusions required by people with severe anemia caused by thalassemia.
As part of this project, participants donate blood specimens to be screened for HIV, hepatitis A, hepatitis B, and hepatitis C, as well as West Nile virus infection; these samples are then stored. The stored blood samples allow CDC to quickly investigate situations in which emerging infections are identified. In addition, clinical data are collected that can be used to describe the health status and extent of complications of people with thalassemia. Data collection efforts increase CDC’s opportunities to detect emerging infections and provide a more comprehensive view of the clinical characteristics and complications experienced by people with thalassemia nationwide. This knowledge of thalassemia will play a vital role in developing new research ideas and methods to optimize health outcomes for people with this condition.
Current research initiatives focus on several areas, including:

The role of comprehensive health care services for thalassemia treatment as a means to prevent complications of the condition

The effectiveness of blood safety and monitoring efforts

The efficacy and adequacy of prevention and research activities

The evaluation of best practices to determine which measures, treatments, and follow-up protocols maximize optimal health outcomes

Conferences and Meetings

International Public Health Learning Collaborative on Hemoglobinopathies
View presentations from the 2010 meeting

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The International Public Health Learning Collaborative on Hemoglobinopathies Meeting was designed to create a forum for the exchange of information on hemoglobinopathies between countries, states, organizations, institutions, and partners who are interested in learning more about the methodologies of both federal and international programs. The objectives of the 1.5-day meeting were:

To provide participants with a basic understanding of public health surveillance and the process, tools, and partnerships needed to create successful programs.

To discuss lessons learned through the current programs funded through RuSH (Registry and Surveillance for Hemoglobinopathies).

To familiarize participants with available resources for establishing, expanding, or enhancing their programs.

To foster interaction and encourage additional partnerships among the participants.

International Public Health Learning Collaborative Summary Report

Public Health Webinar Series on Hemoglobinopathies
4th Thursday of every month from 2:00PM – 3:00PM EST
The purpose of this webinar series is to offer a hemoglobinopathies learning collaborative platform for providers, consumers, educators, and scientists.

To Join the Webinar
Go to: https://www.livemeeting.com/cc/cdc/join
Enter meeting ID: 84QK2D
Click "Join".

First Time Users
To save time before the meeting, check your system to make sure it is ready to use Microsoft Office Live Meeting.

For Audio
Dial 1-877-953-6706 and enter participant code: 9706616
If you are unable to join us on the internet for viewing, you are welcome to call in for audio access only.