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MARCH 2020

Who we are:

The Western States Regional Hemophilia Network (WSRHN) - AKA Region IX - represents the 13 federally recognized Hemophilia Treatment Centers (HTC) in California, Guam, Hawaii, and Nevada, serving over 10,300 individuals with suspected and diagnosed bleeding and clotting disorders that are genetic, rare and complex. We belong to a nationwide network of over 140 Centers that serve over 35,000 individuals, using team-based integrated care per National Hemophilia Foundation recommendations and guidelines, to fulfill CDC and HRSA goals and objectives. 
 
Why a Newsletter?
Our goals are to strengthen communication across our region. And to engage, educate, and link HTCs with stakeholders locally, regionally, and nationally to join us in improving the health of inherited blood disorders community.

Interested in sharing your updates in our newsletter? Email Tran Le at
tle@c3dibd.org

IN THIS NEWSLETTER, WE ARE INCLUDING:
Newsletter Survey
 
National & Regional Updates
 
Upcoming Educational Events, webinars & Resources
 
NEWSLETTER SURVEY
We started this quarterly Newsletter for our HTC Region last year.  We hoped it could provide valuable updates, provide resources, and improve everyone’s knowledge about what’s going on around the region.  So, how are we doing?

Please take this brief survey by Tuesday, March 31, 2020.  The results will help us understand the newsletter’s value, and whether/how we should modify it to better meet your needs.  Thank you!
NATIONAL & REGIONAL UPDATES
New! Due to the travel and work restrictions, many of us are experiencing at our institutions, we have decided to cancel, or postpone indefinitely, the 2020 Western States Regional Hemophilia Network Annual Conference slated for Torrance, California, from April 4-6, 2020. It was a spectacular agenda and speaker list, so we hope, in the future, we will be able to re-assemble this excellent program when it is safe to travel and restrictions are lifted. As no one wants to be placed under quarantine, or even worse, to become sick, this is clearly the right thing to do.

We will send registrants a formal announcement, on letterhead, which is suitable to share with any airline or rental company that may require documentation of cancellation in order to get a refund.  Please contact Tran Le, at tle@c3dibd.org, for more information.

New! 340B Recertification was due on February 24, 2020. 100% of HTCs in our region and nation successfully completed the recertification process.  Allowing HTCs to continue to provide outpatient drugs at 340B discounted price, and reinvest revenue into HTCs to continue to meet patient needs for expert diagnosis, treatment, education, counseling, outreach, surveillance, and research.  Thanks to all involved!

New! The System for Award Management (SAM.gov) will be transitioning from DUNS Number as the Unique Entity Identifier (UEI) for doing business with the U.S. government over the next two quarters. The Office of Integrated Award Environment is moving to a new, non-proprietary identifier requested in, and assigned by, SAM.gov. The standard for the new UEI was published in the Federal Register. General Services Administration (GSA) will begin to assign, and make visible, new SAM-generated unique Entity IDs for all entity registrations, contract opportunities, award reporting, subcontract reporting, and past performance reporting. For more additional information, click here.

New! HTC Physical Therapists (PT) held their mid-year in-person meeting on Monday, February 24, 2020, at CIBD. PTs from around the region gathered to share best practices, discuss complex cases, and build their skills and knowledge.  The PTs continue to meet monthly via video conference.  Join the calls!  Contact Grace Hernandez, GHernandez@c3dibd.org, or Pattye Tobase, Patricia.Tobase@ucsf.edu, for more information.

New! HTC Data Manager/CRAs continue to meet monthly via video conference, focusing on data entry quality.  ATHN leadership is joining these calls, by invitation to learn more about how to conduct this type of ‘learning collaborative’ in which our region is pioneering.  And which ATHN is seeking to develop nationally through its new ‘community of practice’.  During their February 2020 call, CRA/DM working group focused on data entry for the Hemostasis and Thrombosis Data Set and our region’s Comp Care Data Set. They provided input to Judith Baker, DrPH, MHSA, Public Health/Policy Director, on areas needing clarification, as well as suggested additions and deletions. 

Join the calls!  For more information contact DM/CRA leads Nicole Crook, NCrook@c3dibd.org, Christina Ashburner, CAshburner@c3dibd.org, or Lisa Preciado, Lisa.Preciado@htcnv.org.

New! HTC Nurses and Nurse Practitioners continue to hold quarterly video conferences.  They are also conducting a survey to better understand priority issues, and how best to meet the needs of our region’s RNs and NPs.  Contact Mary Lesh, LeshM@peds.ucsf.edu, Ruth Martinez, RLMartinez@valleychildrens.org, Jennifer Donkin, JDonkin@chla.usc.edu, or Jennifer Foster-Faucet, Jennifer.Foster-Fausett@ucsf.edu, for more information.

New! HTC 340B/Pharmacy and Administrator Leads have regrouped, adding four new leaders, and are conducting a survey to better understand priority issues, and how best to meet the needs of their counterparts.  Contact Lori Gillespie, LGillespie@c3dibd.org, Marisa Ng, MNg@stanfordchildrens.org, Mindy Chuang, MChuang@stanfordchildrens.org, Binh Ngo, b7ngo@ucsd.edu, or Jenna Arzinger, jarzinger@chla.usc.edu, for more information.

New!  CDC Bleeding Disorder Surveillance Registry enrollment is going great!  From 10/1/2019 through 1/31/2020, Q1 of the project period, HTCs enrolled 270 people in the registry. This 270 includes both initial enrollments as well as ‘subsequent’ enrollments.  These 270 represent 37% of our annual target of 723. Strong work, all! For more information contact, Judith Baker, DrPH, MHSA, Public Health/Policy Director, JBaker@c3dibd.org.
OUR HTC NETWORK IS GROWING!
Please welcome these HTC staff that joined us since December 2019:

Center for Inherited Blood Disorders
Denise Angulo, MSW, LSW, Social Worker
Raji Ganapathy, Research Assistant

Children’s Hospital Los Angeles
Jacqueline Donahue, PsyD, Psychologist
Eunbbie Kim, Clinical Research Coordinator

Hemostasis and Thrombosis Center of Nevada
Nik Rashid, MD, Medical Director
Stacey Antolin, Registered Nurse

University of California, Davis
Judith Kauffman, RN, MS, Hemophilia Nurse Coordinator

University of California, San Diego
Michael Glenzer, MPH, Research Coordinator
Kevin Westbrook, LVN
Victoria Millstein, Interim Practice ManageR
Lisa Rhodes, MPP, Finance Analyst

UCSF Benioff Children’s Hospital Oakland
Karina Unpingco, RN, FNP, Nurse Practitioner

University of California, San Francisco
Li Ping He, Financial Analyst
Monica Woodworth, RN, Clinical Nurse II
UPCOMING EDUCATIONAL EVENTS, WEBINARS, AND RESOURCES:
New! Hemophilia Council of California has several upcoming events: their bi-annual Health Policy Summit is set for Thursday, March 26, from 10:30 am – 3:30 pm in Pasadena.  Registration is required: https://www.hemophiliaca.org/health-policy-summit/

The next Health Care Access Forum will be held on Thursday, June 11, 2020, at 9:00 am to 12:00 pm. The forum will take place at the California Endowment Center for Healthy Communities, 1414 K St, Sacramento, California. Registration is limited to Healthcare Access Forum members and special invited guests. To register, click here.

Musculoskeletal Ultrasound Training for Hemophilia and Other Arthritic Conditions, presented by UC San Diego School of Medicine, is a 3-day hands-on course developed to provide training in musculoskeletal ultrasound (MSKUS) for evaluation of hemophilic joint disease, but also other arthritic conditions and musculoskeletal abnormalities and syndromes. The main objective of the course is to enable physicians and other care providers to use MSKUS as a point-of-care imaging tool to assist with the diagnosis and treatment of joint pain. The course has specific elements geared towards hemophilic joint disease to recognize joint bleeding, synovial hypertrophy and synovitis, cartilage degradation, osteochondral lesions and other structural joint abnormalities. The course also includes a teaching module pertaining to the Joint Tissue Activity and Damage Exam (JADE), a validated ultrasound imaging protocol for hemophilic joints. Upcoming date: April 1-3, 2020. Contact Marlene Zepeda at mxzepeda@ucsd.edu or (858) 249-0341.

The Foundation for Women & Girls with Blood Disorders is convening its inaugural biennial educational conference September 25-27, 2020 in Arlington, VA.  Click here for more information.  Archived webinars, symposia and workshops are found here.

The CDC Blood Disorders website has a wealth of information on hemophilia, von Willebrand Disease, women’s bleeding disorders, hereditary hemorrhagic telangiectasia, venous thromboembolism, vitamin K deficiency bleeding and red cell defects: sickle cell disease and thalassemia.  Within each disorder, you can find information on the clinical matters (symptoms, diagnosis, treatment), blood safety, research, data/statistics scientific articles, educational materials, training courses and webinars, as well as disorder specific matters. Information is available in Spanish, too.  Hemophilia Treatment Centers are featured, including the HTC Directory, which gives contact information of HTCs and staff staff nationwide. Data from the Community Counts surveillance project is here.

ATHN is offering a new National Hemophilia Program Coordinating Center (NHPCC) web based training program on Patient Engagement through Motivational Interviewing (MI). This program is designed to support HTC comprehensive care providers in enhancing patient engagement, a Health Resources and Services Administration quality improvement focus. MI is an evidence-based approach shown to increase patient engagement and improve the quality of the therapeutic relationship, which may lead to better care, improved outcomes, and overall health. The MI training program is intended for anyone engaged in the care of patients with bleeding and clotting disorders in the HTC setting. It is not a HRSA grant requirement to participate, is a resource for all HTC staff. Social workers, physicians, physician assistants, nurses, and nurse practitioners who complete the entire live program held Nov 2019-March 2020 can claim seven hours of CME/CE credit. All webinars from the series will be archived and available for on demand review.  For more information, click here.

The Partners in Bleeding Disorders Education programs offer education, both in person and online, for HTC staff, primarily from nursing, physical therapy, and social work. Learning activities are accredited; CE credits are available. In person courses include Basic and Advanced Partners, and a Presentation Skills Workshop. Most in person courses are held at the Indianapolis HTC; travel/lodging cost are covered. PartnersPRN online learning has an extensive array of online courses for HTC clinicians with free registration. For more information, click here.

We encourage all of our HTCs to share news and updates with the network through this quarterly newsletter. Please send images you may want to be displayed in conjunction with a brief blurb of your organization's/discipline’s updates to Shalini Vora at svora@c3dibd.org or Tran Le at tle@c3dibd.org.

The 2020 deadlines are May 18, 2020; August 23, 2020; and November 22, 2020.

Editors:
Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
Copyright © 2019 WSRHN, All rights reserved.
Western States Regional Hemophilia Network

This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H30MC24045 entitled “Western States Hemophilia Treatment Centers” in the amount of $500,000.  This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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Center For Inherited Blood Disorders · 2670 N Main St Ste 100 · Santa Ana, CA 92705-6639 · USA

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