The Inborn Errors of Metabolism Collaborative (IBEMC) systematically collects information about the clinical progress of people that have conditions identified by newborn screening, focusing on inborn errors of metabolism. Data is used to learn about their survival, medical status, and long-term outcomes; and permit development of evidence-based practice in patient care.
Presenters on this webinar include Susan Berry, Mat Edick and Sally Hiner. Susan Berry is with the University of Minnesota and is the Clinical Co-PI for the IBEMC. She has been involved from its inception, bringing the concept to the Region 4 Genetics Collaborative, and working to develop and implement long-term follow up for IBEM first as a workgroup, later as a HRSA Priority Project and most recently as an NIH supported R01. Mat Edick joined MPHI (Michigan Public Health Institute) in April of 2015 as the Senior Research Scientist for the IBEMC. Sally Hiner, also with MPHI is the IBEMC Senior Project Coordinator and has also been with the project from its beginning with Region 4.
Recording of the webinar is available here.
Concerned about health coverage inequities among CSHCN in your state? The Catalyst Center has created “Health Care Coverage and Financing for Children with Special Health Care Needs: A Tutorial to Address Inequities” to help Maternal and Child Health (MCH) leaders, family leaders, and other stakeholders understand and address health care coverage inequities that exist among vulnerable subgroups of CSHCN based on race, ethnicity, language, immigration status, and level of functional difficulty .
Join the Catalyst center to “get acquainted” with this new tutorial. MCH staff from Alaska and Michigan will share strategies they use to work towards health equity for CSHCN in their states.
Register for the webinar here.
Enrollment for the next Genetic Counselor Telegenetics training has closed. This training will include ten self-paced on-line modules, two webinars, and a one day in-person, hands-on session. The in-person session is scheduled for August 2, 2016 in Tucson, AZ. The WSGSC provides travel support for the in-person training and continuing education credits are provided for participants. If you or a genetic counselor you know is interested in future trainings, please contact Michelle at firstname.lastname@example.org for more information.
Travel to Nashville, Tennessee for the 4th Annual South Central Telehealth Forum. Presenters and Partners from across the country will share tools, resources and techniques on how they Drive Quality healthcare via telemedicine and mHealth.
- mHealth/Remote Patient Monitoring
- Safe Practice
- Chronic Disease
- School-Based Programs
- Measuring Outcomes
- Rural and Federal Policy
- Real-World Academic, Hospital and Clinic Examples
- Special sessions on telegenetics!
The meeting will help professionals connect and collaborate to build programs and improve patient outcomes.
Presenter: Janet Major, Associate Director of Facilities, Arizona Telemedicine Program and Vice Chair for the Technology Special Interest Group of the American Telemedicine Association
- Hear about some of the current trends observed at the annual signature event for telemedicine technology.
- Take a virtual tour of the ATA 2015 Exhibit Hall & Showcase @ the Los Angeles Convention Center.
- Learn who and where you can go to get access to the best resources in telemedicine and telehealth technology.
Go here to access the archived webinar.
The Genetic Alliance, in partnership with the CDC Office of Public Health Genomics, has recently launched of a new video focused on hereditary cancer screening and prevention. Entitled “Using Genomics to Prevent Cancer Now,” this video is part of a larger effort to encourage the creation or expansion of programs focused on screening and prevention of cancer.
To watch the video, go to: http://www.geneticalliance.org/programs/genesinlife/publichealth
Part 1: SCID – The Disease, Diagnosis, Treatment, and Outcomes: Early vs. Late Treatment
Dr. Susan Skoda-Smith from Seattle Children’s Hospital will provide an overview of severe combined immunodeficiency (SCID), how it is diagnosed, and its treatment.
Please register for this webinar by clicking here: https://www4.gotomeeting.com/register/597231479
Webinar Dates and Times:
- Guam: Tuesday, February 25th at 8:00am
- Hawaii: Monday, February 24th at 12:00pm
- Alaska: Monday, February 24th at 1:00pm
- CA, OR, WA: Monday, February 24th at 2:00pm
- Idaho: Monday, February 24th at 3:00pm
Part 2: State Updates about Newborn Screening for SCID
The second in a series of two webinars about newborn screening for SCID, this webinar will provide state updates of newborn screening for SCID.
Please register for this webinar by clicking here: https://www4.gotomeeting.com/register/554950743
Webinar Dates and Times:
- Guam: Wednesday, March 12 at 8:00am
- Hawaii: Tuesday, March 11 at 12:00pm
- Alaska: Tuesday, March 11 at 2:00pm
- CA, OR, WA: Tuesday, March 11 at 3:00pm
- Idaho: Tuesday, March 11 at 4:00pm
The APHL Quality Assurance/Quality Control Subcommittee of the Newborn Screening and Genetics in Public Health Committee and the CDC Newborn Screening Quality Assurance Program are sponsoring a 2-part webinar series, Pompe Disease 101: Clinical Aspects and Screening Methods. This webinar series is geared towards those who are or may be responsible for screening for, diagnosing and treating Pompe Disease.
Part 1: Pompe Disease: From Diagnosis to Treatment
Wednesday, February 19 at 1:30-3:00 pm ET.
This webinar will provide the audience with the clinical aspects of Pompe Disease including an overview of the disease, diagnostic issues and treatment options.
Part 2: Pompe Disease Newborn Screening Methodology
Wednesday, February 26 at 1:30-3:00 pm ET.
The second webinar will highlight the methods currently in use to screen for Pompe Disease in public health laboratories, state experiences with various screening methods, and the availability of the CDC proficiency testing materials for Pompe Disease.
Due to the limited number of available phone lines, we ask that you utilize a single line for your institution, if possible. A toll-free audio conferencing bridge will allow access by phone along with internet access for viewing slide presentations.
Webinar Access Information
February 19: https://www.mymeetings.com/nc/join.php?i=PW3695585&p=9605862&t=c to access the webinar directly (conference number: PW3695585, passcode: 9605862). Or listen toll free by dialing 888.469.1558.
February 26: https://www.mymeetings.com/nc/join.php?i=PW3695732&p=9605862&t=c to access the webinar directly (conference number: PW3695732, passcode: 9605862). Or listen toll free by dialing 888.469.1558.
If you have any questions please contact Ruhiyyih Degeberg.
The Genetics in Primary Care Institute has organized a 6-part webinar series entitled “Integrating Genetics Into Your Practice: What Every Primary Care Provider Should Know.” The series will focus on providing primary care providers with the knowledge and resources to better provide genetic medicine as part of a medical home.
For more information about the entire webinar series, or to register for one of the webinars, go to: http://www.geneticsinprimarycare.org/Provider%20Education/Pages/gpci-webinars.aspx
The last two webinars in the series are listed below:
Genetic Counseling in Primary Care Wednesday, January 15 at 1:00pm Eastern Emily Edelman, MS, CGC
Co-Management and Transitions for Patients with Genetic Conditions
Thursday, February 13 at 3:00pm Eastern
Kerry Jadele, MD, FAAP, FACMG
If you missed one of the previous webinars, you can find a recording at the GPCI website: http://geneticsinprimarycare.org/Provider%20Education/Pages/gpci-webinars.aspx