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September 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 10,200 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, Grants and Program Coordinator, at
tle@c3dibd.org

IN THIS NEWSLETTER, WE ARE INCLUDING:
National Bleeding/Clotting Disorders Data & Surveillance 

COVID-19 Updates

Regional Telementoring

Regional Workgroups  

Publications & Resources

Upcoming Webinars

Past Event & Webinars 
NATIONAL BLEEDING/CLOTTING DISORDERS DATA & SURVEILLANCE
New! Free genotyping to individuals with Rare Coagulation Disorders (RCD) is available through ATHN 10 and highlights CIBD’s lab.  The primary goal of this multi-center project is to leverage the infrastructure at ATHN affiliated Hemophilia Treatment Centers (HTCs) and CIBD’s laboratory services to document genetic data on the population of RCD patients being cared for in US HTCs. The project will enroll approximately 1,300 participants. Participants must have an established RCD diagnosis, must currently receive or have received care at an ATHN affiliated HTC, and must be authorized for the ATHNdataset. The testing will be performed under the direction of Diane Nugent, MD, President & Medical Director, CIBD.  For more information about participating please contact Christina Ashburner, Clinical Research Coordinator, CIBD,  at 714-221-1219 or cashburner@c3dibd.org.

New! The Centers for Disease Control and Prevention (CDC) project, Public Health Surveillance for the Prevention of Complications of Bleeding Disorders (AKA Community Counts), will continue at Hemophilia Treatment Centers nationwide through a 5-year cooperative agreement awarded to American Thrombosis and Hemostasis Network (ATHN). by the. The project has been led by ATHN since 2011. ATHN provides the national platform for collecting project data and specimens, which are used to monitor for inhibitor development and other bleeding disorder complication. ATHN will continue to fund participating HTCs through contracts with regional core centers. Center for Inherited Blood Disorders (CIBD) is the regional core center for the Western States/Region IX. Continued collection of data is significant as much remains to be understood about inhibitors and other complications, as well as the impact of new-generation treatments. For information on what we’ve learned from the CDC Community Counts surveillance, click here.

New! Due to the CDC's response to COVID-19, testing for CDC’s Community Counts study specimens is still suspended. More information will be provided as it becomes available. In the meantime, see answers to common questions below.
  • Can HTCs still ship specimens to CDC? Yes, you may still ship specimens to CDC. The suspension only impacts CDC’s ability to perform real-time specimen testing in the short-term. Any specimens sent to CDC will be processed, frozen, and tested later. Due to a CDC administrative timeline, we request that you do not ship specimens between August 27 and September 30, 2020. If you are not able to freeze and hold specimens during this time, please contact support@athn.org to make alternative arrangements.
  • How do HTCs request shipping supplies during COVID-19? Requests for supplies should be emailed to communitycounts@cdc.gov rather than faxed, as Division of Blood Disorders (DBD) staff are teleworking due to COVID-19 restrictions and do not have access to the fax machine (see the “Reminders” section of this newsletter for instructions).
  • When will lab testing resume? The DBD Lab is working on a phased approach to resume specimen testing and reporting results. Details about the phased approach will be sent to HTCs.
CDC’s changes to the Community Counts Registry Visit Forms have been completed and the forms are now available in Study Manager. An announcement regarding these changes was initially sent to HTCs on July 14, 2020. Questions have been added to the Registry Initial and Subsequent Visit Forms to accommodate CDC’s request to be able to establish whether the patient has taken Hemlibra recently, and if so, to promote reporting of a meaningful recent result from a Chromogenic Bethesda Assay using bovine reagents, or from a Nijmegen Bethesda Assay performed before the patient-initiated Hemlibra.

If you have questions or concerns about these changes, please contact support@athn.org.

New! Third National HTC Patient Satisfaction Surgery (PSS) Launches Spring 2021.  The Steering Committee is gathering input into potential changes to the survey and will provide instructions and technical assistance to HTCs.  Data analysis and dissemination continue to share what we learned.  Most recently, this includes submitting an abstract to THSNA 2020 focusing on patients with mild hemophilia, and a manuscript under review at the journal Haemophilia.  Stakeholders at the HTC, regional, and national levels confirm the value of the PSS.  For information on the PSS, see the website:  www.htcsurvey.com or contact Steering Committee Co-Chair, Judith Baker, DrPH, MHSA, WSRHN/Region IX Regional Public Health Director at CIBD:  jbaker@c3dibd.org
COVID-19 UPDATES
New! Telehealth Flexibilities: On August 19, the federal Centers for Medicare & Medicaid Services (CMS) approved additional section 1135 flexibilities related to the provision of telehealth services, retroactive to March 1, 2020, through the duration of the public health emergency.

Additionally, CMS issued additional blanket waivers that affect providers nationwide, including additional flexibilities for telehealth services and waiving certain requirements for Rural Health Clinics and Federally Qualified Health Centers. The waiver or modification of these provisions did not require individualized approval; the full list of blanket waivers can be found on CMS’ website.

New! California COVID Update - On August 20, CMS approved California State Plan Amendment (SPA) 20-0025, retroactive to March 1, 2020, addressing provisions related to disaster relief. The SPA modifies the rehabilitative services benefit, allowing Medi-Cal State Plan and Drug Medi-Cal Organized Delivery System providers to provide rehabilitative services in locations as recognized by DHCS. This SPA also allows for Medi-Cal to cover administering and processing of COVID-19 laboratory and diagnostic tests in certain non-office settings, such as mobile testing sites, parking lots, and other temporary outdoor locations, in order to minimize the transmission of COVID-19.

DHCS published additional COVID-19 emergency guidance for providers, beneficiaries, and the public: Additional California COVID updates will be posted to the DHCS COVID-19 resource page.
REGIONAL TELEMENTORING
New! The WSRHN continues to host robust monthly telementoring sessions with the aims to create a forum where healthcare providers can discuss challenges and success they experience in-patient care. The sessions consist of a case presentation and a didactic lecture. Please join our upcoming sessions listed below.
 
October 29, 2020, at 12:00-1:00 pm
Session: TBA
Presenter: Daisy Cortes, MD

November 17, 2020, at 12:00-1:00 pm
Session: Challenges in Sickle Cell Disease Care
Presenter: Doris Quon, MD
 
To view the full calendar click here.
Below are previously recorded sessions:

Session: Dealing with the Coagulopathy Challenges of COVID: A Survey of the WSRHN
Presenter: Amit Soni, MD; Broadcast Date: June 16, 2020
 
Session: The Inhibitor Patient Journey in the New Era
Presenter: Guy Young, MD; Broadcast Date: July 15, 2020
 
Session: Co-inherited Hemophilias
Presenter: Courtney Thornburg, MD, MS; Broadcast Date: August 26, 2020

Session: VTE on Hemlibrain the Setting of Acquired Hemophilia A
Presenter: Nicolas Gallastegui Crestani, MD, and Annette von Drygalski, MD, PharmD; Broadcast Date: September 9, 2020
 
For more information, please contact Shalini Vora, MPH, Director of Grants Administration, at svora@c3dibd.org.
REGIONAL WORKGROUP
New! There are a few openings remaining in the Advanced Partners Program for Physical Therapists (PT) for 2020. This virtual program will occur on September 24-25, 2020, in a format that allows real-time discussion between participants and faculty. This virtual program offers an excellent opportunity for experienced Hemophilia Treatment Center PTs to participate in the program without requiring significant time off work for multi-day travel. If you are interested in attending the 2020 Advanced Physical Therapy Program, please contact Natalie Duncan, MPH, Partners Program Manager, Indiana Hemophilia and Thrombosis Center, at nduncan@ihtc.org or Sherry Loucks, Partners Program Coordinator, Indiana Hemophilia and Thrombosis Center, at sloucks@ihtc.org to get registered. Click here to view the agenda. Note that all program registrations require Regional Coordinator approval to ensure enrollment criteria are met.

New! The WSRHN’s PT workgroup has been awarded a Large Grant by the Hemophilia Alliance Foundation to develop online educational videos to address challenges faced by individuals with bleeding disorders through a physical therapy lens. Funding will create online educational videos about physical therapy-related topics for youth and young adults with bleeding disorders as they transition to the adult model of care. The focus is on messaging and topic areas that prioritize physical activity, injury prevention, and rehabilitation. For more information, please contact, Grace Hernandez, PT, CIBD, ghernandez@c3dibd.org.

New! The WSRHN’s CRA/Data Manager workgroup is continuing strong with virtual meetings. Participants are able to connect, ask questions, and discuss common issues with research, data entry, and uncertainties in the time of COVID-19. For additional information about the workgroup, please contact, Christina Ashburner, at cashburner@c3dibd.org.

New! The WSRHN’s New HTC Administrator/Clinic Manager WG’s welcomes Co-Chairs Sachi Suzuki, MPH (CHLA), and Kim Schaefer, NP-C (UC Davis).  The Co-Chairs began their initial efforts, which will start with a regional needs assessment of all their counterparts.  This first step will help identify key issues and priorities and help inform the development of programming to address common concerns. To get involved, or for more information, contact either Kim or Sachi at (PLEASE INSERT EMAIL ADDRESSES)

New! The WSRHN’s Nurses/Nurse Practitioners workgroup is hosting quarterly webinars to connect, address common issues in clinical management and operations, all to strengthen care and services provided to patients and caregivers.  In July, Stanford’s Judie Lea, PNP; Elaine Macasiray, RN; and Gagandeep Kaur, RN presented on The Hemophilia Annual Comp Visit 2.0: Implementing a Hybrid Care Model for Bleeding Disorder Patients; the recording is here. The workgroup also welcomes Elaine to its leadership partners: Mary Lesh, NP (UCSF), Jennifer Donkin, DNP (CHLA), and Jennifer Foster-Faucet (UCSF). The RN/NP WG is devising a needs assessment to better understand current needs and priorities for future programming. For more info, please contact Mary Lesh, PNP, MSN, Pediatric Nurse Practitioner, at leshm@ucsf.edu.
OUR HTC NETWORK IS GROWING! 
Please welcome these HTC staff that joined us since June 2020.
 
Center for Inherited Blood Disorders
  • Jose Ramirez, Pharmacy Technican
  • Melody Tsoi, MHA, PMP, Project Manager
  • Selina Diaz, Research Coordinator
Rady Children's Hospital-San Diego
  • Christina Baker, PsyD, Psychologist
Stanford University
  • Alex Alverez, ASW, Social Worker
University of California, San Diego
  • Michael Glenzer, MPH, HTC Research Coordinator
  • Victoria Millstein, MSF, HTC Administrator Director
  • Lisa Rhodes, BA, HTC Financial Manager
  • Kevin Westbrook, HTC Sr. LVN
  • Jenny Zhou, MD, Attending Physician
  • SonHa Nguyen, MD, Fellow
  • Nicolas Gallastegui Crestani, MD, Fellow
University of California, San Francisco
  • Hannah Stone, Clinical Research Coordinator
Valley’s Children’s
  • Danielle Valencia, RN, Adult Clinic/Program Coordinator
PUBLICATIONS & RESOURCES
New! Schieve L.A., Byams V.R., Dupervil B., et al. Evaluation of CDC’s Hemophilia Surveillance Program — Universal Data Collection (1998–2011) and Community Counts (2011–2019), United States. MMWR Surveill Summ 2020;69(No. SS-5):1–18. DOI: http://dx.doi.org/10.15585/mmwr.ss6905a1

New! Biberger, A., Ashburner, C., Hirst, C., Charlet, J., Spencer, D. (2020, August 1-8). The moti-VIII study factors for empowering mobility and well-being in hemophilia A [Poster session]. National Hemophilia Foundation Bleeding Disorders Conference.

New! Ashburner, C., Baker, J., Preciado, L., Crook, N., Ganapathy, R. (2020, August 1-8). An ECHO’d practice: utilizing tele-mentoring for enhanced data quality across one hemophilia treatment center Region [Poster session]. National Hemophilia Foundation Bleeding Disorders Conference.

New! Courtney Thornburg, MD, MS, (Rady Children’s Hospital San Diego) and Guy Young, MD, (Children’s Hospital Los Angeles) have developed an educational tool entitled Improving Hemophilia A Care and Patient Adherence: Planning Prophylaxis to Meet Individual Patients’ Needs. The publication outlines clinical evidence on the risks and benefits of available prophylactic strategies in the individualized management of hemophilia A; and provides core principles of shared decision making to engage patients.

New! University of California, San Diego continues to host Musculoskeletal Ultrasound Training for Hemophilia and Other Arthritic Conditions. The 2-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 pains. In addition, 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. Click here for more information on the training.
For additional information, please contact Marlene Zepeda, MSKUS Coordinator, mxzepeda@health.ucsd.edu.
UPCOMING WEBINAR

New! On September 17, 2020, at 2:00 pm ET, the CDC will feature a webinar entitled Update on COVID-19 and Thrombosis Risk. In this webinar, the panel of experts will summarize the evidence from peer-reviewed publications of COVID-19-associated VTE; describe proposed mechanisms by which COVID-19 may increase the risk for VTE; and recount the latest guidelines for preventing VTE in patients who are hospitalized for COVID-19.

Click here to register.


For more information contact Cynthia Sayers: cay1@cdc.gov.
PAST EVENT & WEBINARS
New! The Hemophilia Foundation of Southern California hosted a virtual event with Vanessa Salinas, MD, Pediatric Hematologist, CIBD, and Denise Angulo, MSW, ASW, Social Worker, CIBD, to discuss various topics and answer particular questions about COVID-19 and blood disorders in Spanish. To view the recording, click here.

2020 Science Update: Diagnosis of von Willebrand Disease in the United States. Veronica Flood, MD, reviews the diagnostic approach to von Willebrand Disease (VWD), including the assessment of bleeding history and the utilization of laboratory measurements, as well as the challenges and advances to this approach. She also shares insights from the Zimmerman Program for the Molecular and Clinical Biology of VWD, a national study of VWD in the United States.
Click here to view the recording.

Overview of Novel Thalassemia Treatments. Sujit Sheth, MD, discusses the basic pathophysiology of the disease and specific targets for novel therapies. He reviews data from trials of the newer agents aimed at reducing or abolishing the transfusion burden and mentions additional strategies that are in early stage development that have the potential to completely change the landscape of thalassemia care.
Click here to view the recording.

Selection of a Risk Assessment Model for VTE Prevention in Hospitalized Medical Patients. Holger Schünemann, MD, MSc, PhD, FRCPC, and Andrea Darzi, MD, MPH present the process and findings of a systematic review and a novel approach they conducted to identify risk factors for venous thromboembolism (VTE) and bleeding in hospitalized medical patients and develop RAMs. They highlight how these findings inform patient management, the validation of RAMs for hospitalized medical patients, and future guideline recommendations.
Click here to view the recording.

Science Update: Inhibitor State of the Science Meeting. Steven Pipe, MD and Margaret Ragni, MD, MPH discuss the progress and challenges in the design and implementation of research studies to prevent and eradicate inhibitors. Inhibitor formation is a serious complication of hemophilia treatment that occurs in 30% of patients at highest risk – youth with severe hemophilia A.  To develop a road map for needed research in this area, working groups met in 2019 at a State of the Science Symposium at the National Heart, Lung, and Blood Institute.
Click here to view the recording.
 

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.

Upcoming newsletter deadlines are:
November 22, 2020; February 19, 2021; May 24, 2021; August 20, 2021; and November 19, 2021

Editors: Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
Copyright © 2020 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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