The blood-separation device Spectra Optia, which has the ability to remove abnormal red blood cells from sickle cell patients, can efficiently and safely replace these cells with healthy red blood cells from donors, a study reports.

The therapeutic tool also uses less red blood cell units than regular transfusion techniques, i.e., without the removal of abnormal red blood cells (RBCs).

The study, “Automatic depletion with Spectra Optia allows a safe 16% reduction of red blood cell pack consumption in exchanged sickle cell anemia patients,” was published in the journal Transfusion.

Sickle-cell anemia results from an abnormality in the oxygen-carrying protein hemoglobin found in red blood cells. Cells become sticky and rigid, with a sickle or crescent moon shape, and are prone to getting trapped in small vessels, stopping the blood from circulating and causing painful vaso-occlusive crisis.

 

A Republic of Congo delegation of health and higher education representatives recently met with Howard University officials, aiming to ultimately advance research into sickle cell disease (SCD) — a particularly pervasive disorder in Africa.

Led by Congo Minister of Health and Population Jacqueline Lydia Mikolo and Minister of Higher Education Bruno Jean Richard Itoua, the group met with Anthony Wutoh, Howard University’s provost and chief academic officer, and James Taylor, MD, director of the university’s Center for Sickle Cell Disease.

“This visit is another step for a project that has already been initiated for both countries,” Mikolo said in a press release. “We hope that now we are going to take practical steps. For us, it will really make a difference.”

 

Some treatments for sickle cell disease or cancer can destroy germ cells that later develop into sperm, putting young boys at risk of reduced fertility in adulthood, a study suggests.

These results could lead to a change in treatment guidelines, giving healthcare providers who are treating prepubescent boys the opportunity to account for these risks before therapy begins and take action to possibly restore these patients’ fertility in the future.

The study, “Spermatogonial quantity in human prepubertal testicular tissue collected for fertility preservation prior to potentially sterilizing therapy,” was recently published in the journal Human Reproduction.

Although it had been previously established that boys who undergo chemotherapy or radiotherapy are potentially at risk of reduced fertility in adulthood, this study is the first to describe the impact of these treatments on future sperm quantity.

 

Part 2 of Global Genes’ new Data DIY series will build our common understanding of the rights we have as data owners and our responsibilities as data stewards. Led by experts in data collection collaboration agreements, you’ll learn how to develop a governance plan for your program that includes key elements, such as:

• Defining program objectives
• Identifying stakeholders
• Building your team
• Protecting participants’ privacy
• Providing for informed consent
• Determining how data is accessed
• Ensuring sustainability over time

Wednesday Evening Welcome Reception: Join fellow guests for a casual meet and greet. The evening welcome reception will be July 17th from 5:00 pm to 7:00 pm EST.

The workshop will be held on Thursday, July 18th, followed by office hours on Friday, July 19th, where attendees will be able to schedule one-on-one time with the experts.

When:
July 17-19, 2019

Where:
Washington Marriott Georgetown
1221 22nd Street Northwest
Washington, DC, United States

This event has ended. Download Presentation Slides.

 

TUESDAY, JUNE 18, 2019 | 2:30 – 3:30 PM
DIRKSEN SENATE OFFICE BUILDING, ROOM G50
RSVP: Betsy Foss-Campbell, bfoss@asgct.org

Join us for updates on Gene therapy approaches presented by prominent scientists in the field
How policymakers can support the development of treatment options for sickle cell disease

SPEAKERS

Tim Scott, United States Senator

Francesca Cook, MPH, Government Relations Committee member, ASGCT; Senior Director, Pricing and Market Access, REGENXBIO

Julie Kanter, MD, Director of Adult Sickle Cell Program; Associate Professor of Hematology and Oncology, University of Alabama at Birmingham

Punam Malik, MD, Professor of Pediatrics, Marjorie Johnson Chair of Gene and Cell Therapy, Director, Cincinnati Comprehensive Sickle Cell Center; Cancer and Blood Disease Institute, Cincinnati Children’s Hospital

Rodrick Murray, Patient advocate providing a personal story on gene therapy’s value for treating sickle cell disease

Matthew Porteus, MD, PhD, Professor of Pediatrics (Stem Cell Transplantation), Stanford University

David Williams, MD, Senior Vice President and Chief Scientific Officer, Boston Children’s Hospital; Chief, Hematology/Oncology, Boston Children’s Hospital; President, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Leland Fikes Professor of Pediatrics, Harvard Medical School

How can policymakers help support the development of gene therapies for sickle cell disease?

• Support the need for robust NIH research funding
• Support appropriations to the sickle cell disease prevention and treatment program and implementation of new surveillance and screening authorities passed in 2018
• Enable novel payment models for approved gene therapies

Hosted in partnership with the Pediatric Hospital Sickle Cell Disease Collaborative and American Society of Gene & Cell Therapy, American Society of Hematology, American Society for Transplantation and Cellular Therapy, and Sickle Cell Disease Association of America, Inc.

This event has ended.

 

The Management of Sickle Cell Symposium is an all-day conference designed to provide information on treating the whole person with sickle cell disease. Sickle cell experts will provide practical tools using case studies and interactive exercises. Sessions will include pain management; mental health tools for both patients and providers; transition skills; and other little known resources related to caring for the whole person. 

The purpose of this educational activity is to use lecture, discussion, and sharing of current and future treatment options to strengthen participant’s knowledge base about sickle cell disease, sickle cell trait, and those living with sickle cell disease.

Program Objectives:

Upon completion of this activity, participants should be able to:

• Discuss complications related to Sickle Cell Disease
• Identify current evidence based practices to improve care of individuals with Sickle Cell Disease

Date & Time:

Saturday, April 25th, 2020; 8:00 AM - 4:00 PM

(Registration opens at 7:30 AM)

Location:

ECMN Event Space, 1101 W. Broadway,

Minneapolis,  Minnesota, United States.

"The Lion King" opens Wednesday night at the Blumenthal Performing Arts Center in uptown, and a local teenager is in the spotlight in the lead role as Simba.

Ramon Reed, 13, stars on Broadway as Simba, but Charlotte is his hometown. Reed, who has sickle cell disease, requested to join the performance in the Queen City that runs until Sept.

“It's another chance every night to inspire new kids, adults, senior citizens, to do whatever they love,” Reed said.

Reed’s mom Rosalyn Hart travels with him. In one year, Reed went from acting in local plays to the Big Apple.

“It has been an emotional, but exciting roller coaster,” Rosalyn Hart said. On the road, Hart is his teacher and his caregiver.

 

Welcome to the SCD C.A.R.E.S. (Collaboration of Advocates for Research, Education and Science) Consortium! The mission of this initiative is to raise awareness about the importance of clinical trials and why it’s beneficial for sickle cell warriors to participate in them. The Sickle Cell Disease Association of America, along with our strategic partners, joined together to educate and encourage more trial participation while providing opportunities and therefore better options for the treatment of sickle cell disease. Related content

https://www.youtube.com/watch?v=iWqQiJeP5ac