SCDC Update

Sickle Cell Disease Programs at 60th ASH Annual Meeting & Exposition 

The 60th American Society of Hematology (ASH) Annual Meeting & Exposition, is scheduled for December 1-4, 2018, in San Diego, CA. The meeting provides an invaluable educational experience and an opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology, including sickle cell disease (SCD). The following is a list of SCD specific programming. 

Sickle Cell Disease Kiosk 
Visit ASH’s SCD Kiosk to learn about ASH’s multifaceted SCD initiative; preview the SCD modules in ASH’s new Benign Hematology Curriculum for Fellows, watch SCD specific rapid fire 5-minute presentations; and play “What is the State of SCD in 2018?” Jeopardy Game style game. The Kiosk will be located in ASH Central.

Friday Scientific Workshop

Sickle Cell Disease in the Aging Individual 

Friday, November 30, 2018: 1:05pm-1:50pm, Room 33B (San Diego Convention Center) Learn more. 

Educational Session

Sickle Cell Disease: New Frontiers 

This session is offered twice: 

Saturday, December 1, 2018: 2:00pm-3:30pm, Ballroom 20D (San Diego Convention Center)

Monday, December 3, 2018: 10:30am-12:00pm, Ballroom 20D (San Diego Convention Center)

Learn more. 

Global Capacity-Building Showcase 

Sunday, December 2, 2018: 6:00pm-8:00pm, Hall GH (San Diego Convention Center)

There are four sickle cell disease specific posters featured in the Global Capacity Building Showcase this year. 

Special Education Session on ASH Clinical Practice Guidelines on Sickle Cell Disease

Sunday, December 2, 2018: 4:30pm-6:00pm, Ballroom 20A (San Diego Convention Center) Learn more. 

Special Interest Session: Sickle Cell Disease: New Drugs, Curative Approaches

Monday, December 3, 2018: 12:15pm-1:15pm, Room 28D (San Diego Convention Center) Learn more. 

Spotlight Session: Managing Acute and Chronic Pain in Patients with Sickle Cell Disease

Monday, December 3, 2018: 2:45pm-4:15pm, Ballroom 20D (San Diego Convention Center) Learn more.

Presidential Symposium: Completing the Genomic Arc in Hematology
Tuesday, December 4, 2018: 9:45am-11:15am, Hall AB (San Diego Convention Center)Learn more.  

Oral and Poster Sessions

A number of oral and poster sessions will feature the latest research in the field of SCD. Click here to learn more about these sessions.

Learn About the SCD CTN Network and ASH Research Collaborative

On Monday, December 3, 2018, from 6:00pm-7:30 pm, the ASH Research Collaborative will host a Sickle Cell Disease Clinical Trials Network (SCD CTN) Q&A in Room 2 of the San Diego Convention Center. This open event will provide information on the recently formed ASH Research Collaborative, which is now recruiting sites for its SCD CTN. Trial sites interested in joining the network will have a chance to have their questions answered directly by CTN leadership and receive an overview of the network and the research registry that will serve as its foundation from CTN Co-Chairs Drs. Charles Abrams and Edward Benz Jr., as well as CTN and registry staff. To RSVP for the ASH Research Collaborative SCD CTN Q&A, please click here. For more information on the network, please visit the website.

SCDAA 46th Annual National Convention Recap    

Congratulations to the Sickle Cell Disease Association of America (SCDAA) for hosting a successful 46th Annual National Convention last month. The convention had 620 registrants from across the world, including Canada, Sweden, Suriname and Ghana. Below are some highlights from the convention: 
 

SCDAA attendees met new child ambassador Kiarra Roseburgh; one of her first initiatives is a pen pal program to communicate with children around the world about SCD. Keynote speakers provided important research information, including Dr. M. Dawn Nelson on dizziness, falling, and hearing loss; Dr. Russell Ware on global strategies for SCD; and Dr. Julie Kanter on gene therapy. Novartis partnered with Jordin Sparks and SCDAA to launch Generation S, a national SCD storytelling project that will help rewrite the SCD story and increase SCD awareness for generations to come. Lastly, attendees gathered for the Unity Soiree, an event of music, dancing, and awards. In attendance were Grammy nominated singer, film and Broadway star Jordin Sparks, and Celebrity Ambassadors Dexter Darden and London Knight. Although they could not be in attendance, Celebrity Ambassadors Billy Garrett and Markus Golden, and Senators Corey Booker and Tim Scott provided welcome videos. Mark your calendar’s for SCDAA’s 47th Annual National Convention: October 9-12, 2019 in Baltimore, MD.

NIH Pain Consortium Centers of Excellence Releases Educational Modules on SCD Pain 

The National Institutes of Health Pain Consortium Centers of Excellence in Pain Education has produced the first of two educational modules on sickle cell disease (SCD) pain. The first module tells the story of Sharee, a 19-year-old girl coping with pain crises related to SCD. The case provides a history of the disease onset and progression from infancy through high school as seen from her perspective, and explained by case principals. Click here to view the first module. 

New One-Stop Webpage for SCD Education & Resources    

The National Marrow Donor Program/Be The Match has created a new webpage to find educational activities on the latest sickle cell disease (SCD) treatment options, clinical trials for SCD, referral guidelines, and resources for clinicians, patients and families. These educational activities and resources provide strategies to engage and educate patients and families with SCD, so that they can make an informed treatment decision.  Visit the new SCD webpage.

Measuring Health-Related Quality of Life in Individuals with SCD 

A recent study entitled, Measuring Health-Related Quality of Life in Individuals with Sickle Cell Disease (SCD) Undergoing Automated Red Blood Cell Exchange, compared patient outcomes in terms of health-related quality of life (HRQOL) for individuals with SCD treated with automated red blood cell exchange (aRBCX) versus simple transfusion. Individuals undergoing aRBCX reported an HRQOL that was 25% higher compared to the period where they were treated with simple transfusion. Patients who were treated with aRBCX reported more energy, mobility, and physical functioning, less pain, greater independence, improved emotional worry and mental health, and improved social life. The abstract was accepted and presented at the 2018 Sickle Cell Diesase Association of America Convention. For additional details regarding this study, please contact Dessie Fafoutis at Dessie.Fafoutis@terumobct.com.

Submit your Organization’s Proposal for SCD Funding

Novartis has launched its 2018 STEP (Solutions to Empower Patients) Program to help support people impacted by sickle cell disease (SCD). Through the program, Novartis is inviting nonprofit organizations that demonstrate innovation in health education, empowerment, and support to help improve the lives of people living with SCD, to submit ideas for potential funding of up to $50,000 each. As many as five proposals will be selected by an external review committee consisting of experts in a variety of fields.  Organizations that wish to apply for funding from the STEP Program should send their completed submission form to STEP.Program@Novartis.com by December 21, 2018.

NEW Patient Resource from ASH 

The American Society of Hematology is excited to announce a new resource about hydroxyurea for young adults and adults living with sickle cell disease (SCD). Hydroxyurea is one of the few U.S. Food and Drug Administration approved therapies for SCD. This informational booklet explains what hydroxyurea is and how it works in patient friendly language, and includes real stories from people who have taken hydroxyurea.  Please click here to download the booklet amd share it with anyone who might be interested in learning more about hydroxyurea.

 

Upcoming SCD Events 

American Society of Hematology 60th Annual Meeting December 1-4, 2018. See schedule of SCD programs and events above.