SCDC Update

Help Raise Awareness for Blood Donation this Month  

January is National Blood Donor Month, a month to focus on celebrating those blood donors who save lives and to inspire friends and family to become blood donors. Blood transfusions are one of the most critical treatments for the 100,000 Americans living with sickle cell disease. It is essential to have a robust supply of compatible red cells ready; the best supply source has been found to come from those of similar race and ethnic backgrounds. 

How can you help?

Share these marketing materials and resources from ADRP, an International Division of America’s Blood Centers, throughout the month of January and encourage your constituents to spread awareness of the need for blood. Blood has an expiration date and needs to be continuously donated to ensure a robust supply is maintained. 

Tweet

Did you know that it’s #NationalBloodDonorMonth? If you are of African ancestry, consider donating your blood this month to those with #sicklecell- they need blood from those of similar ancestry in order to stay healthy! http://bit.ly/2swqGAT

Post this to Facebook 

January is National Blood Donor Month. If you are of African ancestry, this month consider donating your blood to those impacted by sickle cell disease. Those living with sickle cell need transfused blood from those with similar ancestry in order to stay healthy. Find your local blood drive today: http://www.aabb.org/tm/donation/Pages/Blood-Bank-Locator.aspx

The Latest in SCD Research, for the SCD Community 

The Sickle Cell Disease Coalition Research and Clinical Trials Working Group is working on a project that focuses on distilling key sickle cell disease (SCD) information presented at national conferences and disseminating it to the SCD community. Each summary is written in plain language to ensure comprehension of topics covered. The research summaries are from key sickle cell-focused sessions at ASH’s 61st Annual Meeting and Exposition, which took place December 7-10, 2019 in Orlando, FL:  

• Researchers study new ways to treat pain in patients with sickle cell disease
• Researchers study a new way to treat sickle cell disease with gene therapy that helps produce an important type of hemoglobin
• Researchers study new ways to treat sickle cell disease by making cells produce a special type of hemoglobin
• Researchers study whether young adults with sickle cell disease receive care from many places and whether that affects their health

Now Available! Gene Therapy Webinar Series 

The American Society of Gene and Cell Therapy has partnered with the National Organization for Rare Disorders to release a patient-friendly five-part webinar series to educate on gene therapy. One of the speakers in the “Life After Gene Therapy” webinar shares his experience with gene therapy for sickle cell disease. You can find the recordings of the full series and details here, with topics including:

• Gene Therapy: Then, Now, Later
• The Science Behind Gene Therapy
• FDA’s Role in Gene Therapy
• Process and Aftercare
• Life After Gene Therapy 

The Jason Carter Clinical Trials Program

Finding and enrolling patients in appropriate clinical trials can be extremely time-consuming. The National Marrow Donor Program’s Jason Carter Clinical Trials Program (JCCTP) partners with health professionals to find clinical trial options that are right for their patients living with sickle cell disease (SCD). If you need help searching for SCD trials, JCCTP is here to help. To learn more about the program, visit: JCCTP.org 

Clinical Trial Travel Grant 

Joining a clinical trial will likely come with some significant financial concerns. Some clinical trials are not covered by insurance, and trials held far from home bring travel and lodging expenses as well. The Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant, in partnership with the Jason Carter Clinical Trials Program, can help cover travel costs such as airfare, ground transportation and accommodations for individuals living with sickle cell disease and a companion. Learn more and applyhere.

ASH Offers New Benign Hematology Curriculum

The American Society of Hematology has released 15 educational modules on sickle cell disease (SCD). These modules are offered as a part of the Society’s Benign Hematology Curriculum (BHC), a series of free, web-based videos designed to supplement education in benign hematology for fellows. Each course focuses on a different benign hematology topic, with the goal of providing fellows with an educational resource that might not be available locally. Click here to view the course. 

4th Global Congress on Sickle Cell Disease - Call for Abstracts 

Abstract submissions are now open for the Global Sickle Cell Disease Network’s 4th Global Congress on Sickle Cell Disease (SCD), which will take place April 7-9, 2020 in Paris, France. The focus of the meeting will be on the compelling need to find one united and coordinated voice for SCD worldwide. Abstract submissions for the Congress will close February 10, 2020. Decision notifications will be sent out on March 9, 2020.The two best abstracts submitted by young investigators (PhD students or post doctorate trainees) will be selected for Young Investigator Prize presentations in the plenary session of the congress.

Abstracts must fall under the categories below: 

• Basic Sciences: Pathophysiology
• Clinics and Clinical Research
• E-medicine
• Transfusion
• Cell and Gene Therapies and Other Innovative Treatments
• Newborn Screening and Prevention
• Human Sciences: Psychology, Education, Quality of Life, Ethical Issues
• Public/Global Health, Health Education and Epidemiology

For more information, and to submit an abstract click here. 

Upcoming SCD Events **(Online & In-Person)

 

Learn How New Medications/Treatments May Be Assessed - WEBINAR 

Interested stakeholders, individuals living with sickle cell disease (SCD), advocates, caregivers and families are invited to join a January 16, 2020, 2-3pm ET webinar, co-hosted by the Sickle Cell Disease Association of America, which will provide information about the metric used to assess the value of health care treatments called the quality-adjusted life year or “QALY” as well as the primary organization conducting QALY-based value assessments called the Institute for Clinical Economic Review (ICER). Because ICER will assess the value of new SCDtreatments in March 2020, it is important for all stakeholders to understand QALYs, ICER, and how those value assessments may be used by public and private payers in their decisions related to drug coverage and formularies. Click here to register. 

SCD Training and Mentoring Program (STAMP) - WEBINAR 

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 is collaborating with the U.S. Department of Health and Human Services’ Office of Minority Health to deliver a new telehealth series for primary care providers called STAMP, the SCD Training and Mentoring Program. This 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. Participating primary care providers will also be eligible to request on-demand consultative services from hematologists to further support patient care. The next training is focused on Hydroxyurea for Adults and is scheduled for January 16, 2020 at 2pm ET. Learn more here. 

Strategies for Combating Racism in Health Systems - WEBINAR

Racism continues to adversely affect the health of families across the country, including those with sickle cell disease, illustrating that there is an urgent need for change. In response, the National Institute for Children’s Health Quality (NICHQ) is hosting a webinar on February 13, 2020, 3-4pm ET focused on helping individuals address racism in public health and health care programs. Attendees will learn about the different levels of racism, how to apply a racial equity lens to improvement initiatives, and the key steps for promoting equity-focused organizational culture change. If you are looking for strategies to combat the racism affecting our health systems, this webinar will get you started. Click here to register. 

4th Global Congress on Sickle Cell Disease 

On April 7-9, 2020, the Global Sickle Cell Disease Network’s 4th Global Congress on Sickle Cell Disease will take place at the United Nations Educational, Scientific and Cultural Organization Headquarters in Paris, France. The theme for the Congress: One Sickle-One World-One Voice emphasizes the single origin and nature of the sickle gene mutation, the rapidly increasing connectivity of the world we live in and the compelling need to find one united and coordinated voice for SCD worldwide. Click here to learn more, and to register. 

First IASCNAPA Conference 

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) is hosting a Sickle Cell Disease Conference: Treating the Whole Person, April 17, 2020 in Memphis, TN. This is an all-day conference designed to provide information on treating the whole person with sickle cell disease. Experts will provide practical tools using case studies and interactive exercises. Sessions will include pain management and mental health tools; transition skills; and “out of the box” techniques such as virtual reality, and drama therapy.  Practical sickle cell resources for nurses, advanced practice practitioners and other healthcare professionals will also be provided. Click here to learn more and to register. 

Foundation for Sickle Cell Disease Research Symposium 

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The Symposium focuses on interactive education, sharing of best practices, and exploring novel approaches to dealing with SCD that goes beyond theory to develop practical, real-life solutions. The next annual FSCDR symposium will take place June 12-14, 2020, in Fort Lauderdale, FL. Learn more and register today.