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Webinar Updates:

Thank you for your interest in the Webinar on Leveraging Data to Address Sickle Cell Disease. If you were not able to attend today’s Webinar - or if you would like to review any of the information we reviewed at the Webinar - please use the below links to view them:

Public Webinar: Leveraging Data to Address Sickle Cell Disease: https://www.youtube.com/watch?v=5hrQ9P9JF6o

Private Webinar: Leveraging Data to Address Sickle Cell Disease (1:00- 1:30pm)
Password: SCData2020
https://hhs.webex.com/hhs/lsr.php?RCID=cc16f5997fd2453c17fc9d6033806f38

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Important work from former OMH Fellow, Aika Aluc and OMH Medical Officer CAPT David Wong in their recently published report in @JPHOonline

on #SCD. Read the report’s findings on population-level #SCD surveillance in California and Georgia: https://tandfonline.com/doi/full/10.1080/08880018.2020.1779886#MinorityHealth

The Howard University’s 1867 Health Innovations Project and Center for Sickle Cell Disease have entered into a new partnership with the U.S. Department of Health and Human Services (HHS) aimed at finding ways to use technology and data to improve the everyday lives of patients with sickle cell disease, or SCD.

Click the link to read more. 

UnitedHealth Group is backing a study that hopes to determine whether carrying the genetic trait that causes sickle cell disease could put a subset of Black Americans at greater risk from COVID-19.

To read more, please check out this link

Stories like Victoria Gray's treatment for sickle cell disease and her continued good health (see article) are exciting and motivate us to continue looking for better data to drive innovative treatment. Register for an account and let us know your thoughts in the comments!

 

https://wamu.org/story/20/06/23/a-year-in-1st-patient-to-get-gene-editing-for-sickle-cell-disease-is-thriving/

The healthcare space innovates slowly and is failing to meet the ever-increasing need for improved service delivery. With this challenge in mind, &Partners developed Health+ (“health plus”): a program that utilizes HCD research to better understand the high-impact health issue placed in focus. Click here to read more about how HHS Office office of the CTO and &Partners strive to provide insights, stories, personas and journeys to inform HHS’s overall goal of accelerating the identification and implementation of innovative solutions to increase the quality of life for patients living with critical issues such as sickle cell disease.

 

https://medium.com/andpartners/health-plus-gov-healthcare-3cf3ef9b992a

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. According to the U.S. Department of Health and Human Services (HHS), there are over 100,000 Americans living with SCD. The disease is most common among people of African ancestry, with about 1 in 12 African Americans carrying the gene. 

While awareness and understanding of SCD has increased in recent years, there is still much more we need to know. There is a nationwide demand for population-level SCD surveillance data to address the needs of the sickle cell community. The federal government is taking steps to raise awareness and improve data collection for the disease.

Defeating SCD will need to begin with data – data for understanding the disease, for addressing it through the healthcare system, and for developing better, sustainable treatments.

Based on these needs, the HHS Office of the Chief Technology Officer has partnered with the nonprofit Center for Open Data Enterprise (CODE) and &Partners to identify high-value datasets and potential interventions to improve care for patients with Sickle Cell Disease.

https://www.fedscoop.com/leveraging-data-address-sickle-cell-disease/

The Department of Health and Human Services Office of the Chief Technology Officer is partnering with the Office of the Assistant Secretary for Health to host a webinar on June 24th to identify data resources to help improve the quality of life for Sickle Cell Disease patients. To read more, please check out the blog.

https://www.hhs.gov/cto/blog/2020/06/11/coming-together-improve-quality-life-patients-scd.html

 

Register for the webinar here: https://www.eventbrite.com/e/leveraging-data-to-address-sickle-cell-disease-tickets-107272506956

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