Learnbase

Webinar Series

The SCDC program collects and analyzes data on the health and health care of Californians living with SCD.

The data will help improve the health, outcomes and quality of life of these Californians by informing decisions about how best to meet their needs. The project is run by the California Rare Disease Surveillance Program, a part of the California Environmental Health Tracking Program and the Public Health Institute.

Project Overview

A longitudinal data collection system collects consistent information about the health and heath care of a specific group of people (population) over long periods of time in order to study trends. This project will meet the following objectives:

  1. Help understand how many people are living with SCD in California and their health status;
  2. Provide information needed to establish cost-effective practices that help improve and potentially extend the lives of people with SCD;
  3. Determine how well current systems of care are meeting the needs of people with SCD and inform the development of new models of care that may better meet those needs; and
  4. Provide accurate, up-to-date information and guidance for clinical care providers, patients, families, advocates, policy makers and government agencies.

This project is the first step in building a sustainable data collection system that could include information on everyone diagnosed with SCD in the United States, not just those who are seen in comprehensive care centers.

All of the data will be de-identified that is, the data system will not contain names, social security numbers, dates of birth, or other types of information that could be used to identify individual patients. Data are collected from already existing sources such as newborn screening diagnoses, insurance claims data, and state hospitalization data.

Project Materials

Longitudinal Data Collection for Sickle Cell Disease in California Dec. 2015 Report (pdf)

Project Webinars

This project will hold webinars each quarter that are free and open to the public. Recordings and slides will be posted here:

Join our email list for quarterly webinar announcements.

Webinar Series

  • SCDC Program Findings and Activities + Future Directions

  • Diversifying the Blood Donor Pool: The need for African American donors to support Sickle Cell Patients

  • Adult Health Care for Sickle Cell Disease: How to Make it Better

  • This webinar is on collaboration and community in sickle cell. Dr. Nik Abdul Rashid and Ms. Linetta Barnes from Nevada will present on how a clinical group and community-based organization work together to improve care and quality of life for people living with sickle cell disease.

  • What’s new at the Sickle Cell Disease Association of America (SCDAA) ? Presented by Ms. Beverley Francis-Gibson, SCDAA President and CEO, and Dr. Biree Andemariam, SCDAA Chief Medical Officer

  • Stepping Up into Adult Care: The Sickle Cell Trevor Thompson Transition (ST3P-UP) Project. Presented by Dr. Ifeyinwa (Ify) Osunkwo, Carolinas HealthCare System, and Dr. Raymona Lawrence, Georgia Southern University.

  • Community Health Workers and Mobile Apps for Transition from Pediatric- to Adult-focused Sickle Cell Care. Presented by Dr. Kim Smith-Whitley, Clinical Director of the Division of Hematology and Director of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia.

  • Innovations in Health Care Transition from Pediatric to Adult Care. Nov 1, 2018 10:00 AM PDT. Peggy McManus, MHS, and Patience White, MD, MA, from the “Got Transition?” program will speak about innovations in health care transition from pediatric to adult care. Register for Webinar ->

  • Wally R. Smith, MD is the Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University (VCU). He also serves as the Vice-Chairman for Research of the Division of General Internal Medicine and is the former Scientific Director of the Center on Health Disparities at VCU. In addition, he is a member […]

  • Michigan’s plan for sickle cell disease across the lifespan: Lessons learned for California. The Michigan Department of Health and Human Services created a state action plan for sickle cell in 2015 that is being used as a model plan by the federal Health Resources & Services Administration.

  • Come hear lessons learned and recommendations stemming from the National Institute for Children’s Health Quality (NICHQ)-led Sickle Cell Disease Treatment Demonstration Program. The national program focused on improving the quality and access to care for patients with sickle cell disease.

  • Neuropathic pain: Can stress and pain itself cause a sickle crisis? by Dr. Thomas Coates. Tuesday, November 14, 2017, from 10-11:30 am PDT. Dr. Coates is the section head of Hematology in the division of Hematology Oncology at Children’s Hospital Los Angeles, and the University of Southern California.

  • Reducing transfusion complications and other surveillance-supported efforts in hemoglobin disorders. By Dr. Angela Snyder, Dr. Jane Branscomb and Dr. Ross Fasano.

  • Evaluating and Addressing Challenges to Optimal Sickle Cell Disease Care, Within the Health Literate Care Model. Dr. Marsha Treadwell, Clinical Scientist at the UCSF Benioff Children’s Hospital Oakland.

  • A Case Study: A few dedicated professionals discuss how and why they created a new county clinic in South Los Angeles.

  • Translating Health Services Research in Sickle Cell Disease to Policy.

  • Enhancing Access to care for Sickle Cell Disease in South Carolina.

  • Emerging Treatments in SCD.

  • Older Adults and Sickle Cell Disease.

  • Project Introduction, presented by Susan Paulukonis and Mary Hulihan.

Partners

The Sickle Cell Data Collection program in California is an initiative of the California Rare Disease Surveillance Program, a part of the California Environmental Health Tracking Program and the Public Health Institute

This project is made possible through funding support from Pfizer, Inc. and Biogen to the CDC Foundation.

Get Involved

Whether you are a health care provider or a family member affected by SCD, you can join our quarterly webinars and be a part of our health promotion and education activities. For more information, please email Faith Raider or join our email list for quarterly webinar announcements.

Previous Projects and Materials

Before the Sickle Cell Data Collection program in California, two earlier projects showed the need for data collection on sickle cell disease.

California was one of seven states to participate in a cooperative agreement with the Centers for Disease Control (CDC) and the National Heart, Lung and Blood Institute (part of the National Institutes of Health) in the Registry and Surveillance System for Hemoglobinopathies (RuSH, 2010-2012).

RuSH led to a follow up CDC-funded validation project in California and Georgia called the Public Health, Research, Epidemiology and Surveillance in Hemoglobinopathies (PHRESH, 2012-2014).

PHRESH educational materials include the following:

California Sickle Cell Disease Fact Sheet  General public version (pdf)

California Sickle Cell Disease Fact Sheet  Provider version (pdf)

Sickle Cell Disease Public Service Announcement

For more on CDC sickle cell data collection activities

STAMP

Sickle Cell Disease Training And Mentoring Program For Primary Care Providers

Many adults living with sickle cell disease (SCD) have challenges accessing care due to a national shortage of SCD-trained hematologists. To help address this gap, the Health Resources and Services Administration (HRSA) is collaborating with the HHS Office of Minority Health to deliver a new telehealth series for primary care providers called STAMP, the SCD Training and Mentoring Program. This free series, taught by hematologists using a case study-based, tele-mentoring approach, will cover the basics of SCD care, such as pain management, hydroxyurea, and preventive services.

To register and for more information go to: https://www.minorityhealth.hhs.gov/sicklecell/