The Hemoglobinopathy SIG aims to promote collaboration among Pediatric Hematologists/Oncologists who care for children, adolescents and young adults with sickle cell disease and other hemoglobinopathies. It will be a forum for clinical care questions as well as research and advocacy initiatives. Additionally, the SIG would work to increase awareness of sickle cell trait status among pre-teens, adolescents and young adults.
Proposed Activity and Scientific Focus
- Develop and maintain a Hemoglobinopathy SIG forum as part of the ASPHO listserve to share resources, discuss clinical issue, and promote SCD and other hemoglobin variant awareness.
- Share educational materials and patient care pathways among members to promote greater SCD and sickle cell trait awareness and best practices.
- Hold forum at ASPHO Annual Meeting dedicated to SCD topics of interest to the SIG membership.
- The SIG will be focused on clinical management of sickle cell disease, trait and scientific studies to improve care, quality of life and to better understand the pathophysiology of the disease.
- The SIG will be open to questions related to other hemoglobinopathies as the interest of the group dictates.
- Unlike oncologic disorders, foundation funding mechanisms are limited for the study of sickle cell disease. Smaller centers may not have the patient numbers necessary to meet enrollment goals for investigator initiated projects. The Hemologlobinopathy SIG will provide a venue for discussion of these studies and foster collaboration among centers on research studies and clinical care initiatives.
Membership in the Hemoglobinopathy SIG will be open to any ASPHO member. Physicians, nurses, pharmacy members and other ASPHO members with an interest in children and young adults with sickle cell disease, trait, and other hemoglobinopathies would use this as a forum to discuss ideas, institute research and collaborate in this vital area of our work.
Bronx Lebanon Hospital Center
St. Louis Children’s Hospital-Washington University
A discussion group in the ASPHO member community has been designated for members of the SIG to share information, documents, links and files. You can access the group by clicking here and signing in.