source: American Society of Pediatric Hematology/Oncology

year: 2017

authors: Philippa G. Sprinz, Eileen, Jacqueline Haley, Patricia Kavanagh, Anjulika Chawla

Background:
Sickle cell disease (SCD) affects approximately 100,000 individuals in the US. Efforts have been directed towards improving the management of complications that individuals with SCD experience: penicillin (PCN) prophylaxis study, the multi-center study of hydroxyurea (HU) and stroke prevention trials. Although the NIH has provided guidelines based on these, there remain significant gaps both in in best clinical practices and community support for children with SCD and a pressing current need to address aspects of health, equity and racial disparity in this population.

Objectives:
For providers and support staff of children with SCD in the New England area to work together to develop practice guidelines, community based participatory research with an opportunity to share data, to share clinical experiences, and to provide community and provider support for affected children and their families.

Results:
Over time the NEPSCC has added members, including an American Red Cross staff member, adult primary care and hematology providers, community based organizations, and an institution outside New England: Wyckoff Hospital, Brooklyn, New York. Research from the consortium includes one paper on obesity in SCD and a number of abstracts presented at national meetings. There is currently a study across the consortium on the impact of HU in children. In addition, through public-private partnerships, NEPSCC has held seven, annual, daylong symposia, free of charge, for members and the greater regional SCD community. Topics presented include pain management, describing conventional and alternative approaches, indications for HU therapy, transition from pediatric to adult care, sickle cell trait, clinical trials, and transplantation. NEPSCC has published handbooks for patients and their families and made available social, legal and medical resources for the community both online and in print.

Conclusion:
With a passion for improving the wellbeing of patients and a willingness to devote time and energy (membership is entirely voluntary), it is possible to bring together a group of likeminded providers and SCD community-based organizations to work at a regional level for the betterment of children and families affected by SCD.

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