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Who we are:
The Center for Inherited Blood Disorders (CIBD) and UCSF Benioff Children’s Hospital Oakland (BCHO) are leading the Pacific Sickle Cell Regional Collaborative (PSCRC) which engages expert sickle cell disease (SCD) clinicians, health departments, Community Based Organizations, health professions associations, federal government partners, public health policy, and epidemiology in 13 states. To learn more about the PSCRC go to: https://pacificscd.org/ or http://casicklecell.org/
Interested in sharing your updates in our newsletter? Email Shalini Vora at svora@c3dibd.org
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Sickle Cell Evidence Based Pain Guidelines
The Clinical Integration and Evidence Based Medicine team at Oregon Health and Science University (OHSU), compiled sickle cell evidence based pain guidelines that were approved by the OHSU’s Professional Board earlier this month. The guidelines were developed by a large multidisciplinary team, including a patient representative. These guidelines provide some basic expectations of how and when pain is treated. They aim to reduce the perceived disparities on how adult SCD patients admitted with pain were treated when compared with individuals with other disease states. OHSU’s next steps include building order sets, standardizing how outpatient SCD and pain providers document a patient’s pain plan, and development of implementation tools. OHSU is also building reports to monitor how often the guidelines are used and whether there is an improvement in outcomes (e.g. shorter length of stay, lower pain scores, shorter time to first analgesia dose, etc.). For more information contact Trisha Wong, MD at wong@ohsu.edu.
Partnering to Improve Transition and Collaboration in Adult Patient Care
The Colorado Sickle Cell Treatment and Research Center (Center) is partnering with Kaiser Permanente Colorado (KP) to improve transition and improve access to adult care for patients with sickle cell disease. Pediatric Care Coordinator, Michael Regier, and KP’s Physician Lead for Pediatric to Adult Transitions of Care are collaborating to help clarify transition policies and to ease the process for those who are transferring care from a pediatric to adult providers. Dr. Kathy Hassell, along with the lead hematologist at KP, are working on clarifying strategies on co-management of patients and identifying ways the Center can provide support to the KP staff and providers. This partnership has also helped identify and link patients to care at the Center. For more information contact Michael Regier at Michael.Regier@ucdenver.edu.
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Nevada
Sickled Not Broken Foundation
Sickled Not Broken Foundation of NV (SNB) received a donation from the Firefighters of Southern Nevada and, in return, the foundation was able to provide 25 children with SCD with toys for the 2018 Christmas holiday. Thank you to Nik Rashid, MD for identifying families in need of support. For more information on the foundation contact Linetta Barnes at linettab@sicklednotbroken.org.
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New! The Federal Pain Management Best Practices Inter-Agency Task Force issued a draft report in late December 2018, calling for individualized, patient-centered pain management to improve the lives of millions of individuals who experience acute and chronic pain. Members of the public will have 90 days to provide comments on the draft report’s proposed recommendations. Click here to for more information and to provide comments.
New! The Sickle Cell Adult Support Group of Southern California, organized by Cayenne Wellness Center, is holding six sickle cell disease support groups in Los Angeles, Loma Linda, Lancaster, Fresno, San Diego, and Bakersfield. Click here to view the full meeting schedule for the support groups.
New! The American Society of Hematology has released the first seven out of 16 educational modules on SCD. These modules are offered as a part of the Benign Hematology Curriculum, 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 first seven module in the SCD course.
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UPCOMING WEBINARS & EVENTS
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New! On January 31, 2019, 6:00-7:30pm, Nevada Childhood Cancer Foundation (NCCF) will hold its monthly Sickle Cell Support Group meeting. Andrea Rapanos, Director of Programs and Services, at the Nevada Childhood Cancer Foundation (NVCCF), will be the guest speaker to give insight on the services provided at The Caring Place. For more information or to RSVP, please call (702) 735-8434 or email silvia@nvccf.org.
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New! The National Academies of Science, Engineering, and Medicine will convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States as requested by Office of Minority Health at the Department of Health and Human Services (HHS). Click here for more information and registration. A portion of the first meeting scheduled for February 21-22, 2019 is open to the public.
New! The Sickle Cell Data Collection program, supported by the Centers for Disease Control and Prevention, has a webinar scheduled for February 28, 12:30-2:00pm PST, with presenters Dr. Ifeyinwa Osunkwo and Raymona Lawrence. This is the third webinar in the mini-series on sickle cell disease and adolescent transition from pediatric to adult-based care. The presenters will talk about their recently-funded PCORI grant entitled ST3P-UP (Sickle Cell Trevor Thompson Transition UP Project). The ST3P-UP Transition Study is a comparative effectiveness study of a structured education-based transition program with or without peer mentoring intervention. To register, go to: https://attendee.gotowebinar.com/register/2357616108659362562.
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Mark Your Calendar! 11th Annual Sickle Cell Disease Educational Seminar will be held at San Diego Marriott Mission Valley in San Diego, CA on September 5-7, 2019. This year's theme is Integrative and Complementary Approaches to Pain Management: Part II - Living Well with Sickle Cell. Please save the date and mark your calendars for the upcoming three-day conference, designed to address the multi-factorial aspects of SCD and sickle cell trait (SCT). In an effort to advocate for improved quality of life for individuals and families affected by SCD in California, Day 1 will begin with a Legislative Action Workshop.
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