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Who We Are:
The Western States Regional Hemophilia Network (WSRHN), also known as Region IX, represents the 14 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. HTCs reduce bleed related deaths,[1] hospitalizations, and costs by 40%.[2] HTCs provide comprehensive diagnostic, treatment, prevention, education, outreach, surveillance, care coordination, cost effective pharmacy services and conduct research. Federally supported HTCs in Region IX belong to a nationwide network of over 140 Center that serve over 35,000 individuals with genetic bleeding or clotting disorders, using team based integrated care per National Hemophilia Foundation recommendations and guidelines, fulfilling CDC and HRSA goals and objectives.
Why a Newsletter? Our goal is 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 individuals affected by inherited blood disorders.
Interested in sharing your updates in our newsletter? Email Shalini Vora at svora@c3dibd.org or Tran Le at tle@c3dibd.org.
[1] Soucie et al Blood 2000
[2] Soucie et al Haemophilia 2001
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In this newsletter, we are including:
- National News
- Regional Updates
- Upcoming webinars & events
- Clinical Trials
- HTC Staff Updates
- Recent Publications
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New! HTC clinicians, patients/families are encouraged to comment on the draft report from the HHS Pain Management Best Practices Inter-Agency TaskForce, the deadline is March 31st. The report recommends individualized, patient-centered pain management to improve the lives of millions of individuals who experience acute and chronic pain. A copy of the report and instructions on how to submit comments are here: https://www.hhs.gov/ash/advisory-committees/pain/reports/index.html
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Regional Updates from the Disciplines
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New! In 2018, several HTC disciplines launched video-telementoring. Using zoom technology, assisted by CIBD, and inspired by Project ECHO™ WSRHN Physical Therapists, Data Managers, and Nurses are video conferencing regularly to increase communication, provide technical assistance to one another, work on regional projects, obtain didactic education and discuss difficult cases. They choose topics based on needs assessments, keep attendance and evaluate their sessions. Here are highlights:
- Physical Therapists (PT) implemented the ECHO Model™ in February 2018. Topics included: musculoskeletal ultrasound imaging, rehabilitation outcomes for inhibitor patients post orthopaedic surgery, kinesiotaping for managing bleeding complications and facilitating rehab, total knee arthropathy and stiffness, iliopsoas bleeds, myofascial decompression, chronic pain, and diagnosing knee bleeds. Contact Grace Hernandez at GHernandez@c3dibd.org or Pattye Tobase at Patricia.Tobase@ucsf.edu for more information.
- The Data Managers/Clinical Research Associates focus their video telementoring on best practices and technical assistance to promote quality data entry and management for the CDC surveillance, ATHN dataset, and Hemostasis and Thrombosis Data Set (HTDS) projects and reporting requirements. Contact Nicole Crook at NCrook@c3dibd.org, Lisa Carvantes at lisa.cervantes@htcnv.org, or Christina Ashburner at cashburner@valleychildrens.org.
- The WSRHN Nurses/NPs conducted a survey in November 2018, identifying educational priorities and launched quarterly telementoring calls in January 2019. The first focused on non-factor therapies and immune tolerance induction. March’s topic is the viability of advance practice-led care models in bleeding disorders clinical management. Contact Mary Lesh at leshm@ucsf.edu, Jennifer Donkin at jdonkin@chla.usc.edu, Ruth Martinez at RLMartinez@valleychildrens.org or Jennifer Foster-Faucett at jennifer.foster-fausett@ucsf.edu for more information.
Our HTC Physical Therapist work-group continues to work on regional PT projects. They are finalizing patient education handouts to standardize recognition of joint and muscle bleeds, and stages in their resolution. The PTs created a shared drive to house materials, devised a lifespan checklist of specific activities that PTs should uniformly address with patients to enhance their physical health and functioning. At their mid-year in person PT meeting, they discussed future projects and planned the 2019 PT PROJECT ECHO sessions. To get more information about the sessions and recordings, contact Grace Hernandez, at GHernandez@c3dibd.org.
The PT team has developed multiple patient education materials. Handouts cover these topics:
- PRICE (English/Spanish) – PRICE is: protection, rest, ice, compression and elevation
- Bleed recognition
- Resolution of bleed
- Muscle bleed
- Resource list for equipment and community resources
For more information regarding the shared drive and on-going projects, please contact Pattye Tobase at Patricia.Tobase@ucsf.edu.
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New! Rady Children’s Hospital San Diego (RCHSD) obtained and initiated Musculoskeletal Ultrasound (MSKUS) as a point-of-care tool for patients. Four HTC clinic members received training. RCHSD has also implemented transition assessments and education using transition tools in EPIC.
New! On Feb 8, 2019 and Feb 11, 2019, Tiffany Lin, MD of UCSF returned to Saipan – the largest island of the Commonwealth of the Northern Mariana Islands (CNMI) for a family, patient, and provider education conference. Both events were sponsored by the CNMI’s Maternal and Child Health Bureau. The family and patient conference (34 attending) provided an update on prevention of bleeding and treatment. It included small group sessions with the local providers including long-standing local bleeding disorders champion Pam Carhill (physical therapist), Jessie Delos Reyes-Willsey (dietician), and Bridgett Mahoney (social worker). Nearly 40 clinicians attended the provider conference, including midwives, dentists, registered nurses, OB/GYN’s, and pediatricians, hearing Dr. Lin’s an update on diagnosis and treatment of bleeding. Dr. Lin's outreach in Saipan is ongoing for several years, featured in this 2016 article published in the American Journal of Public Health. Below is a photo from the recent visit.
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CNMI- Saipan February, 2019 - Bleeding Disorders Clinical Care and Conference Leader L to R:
Pam Carhill (MPT), Jessie Delos Reyes-Willsey (MPH, RD), Bridgett Mahoney (MSW), Shiella Marie P. Deray (Maternal and Child Health Bureau), Tiffany Lin (MD), Heather Pangelinan (MS, Maternal and Child Health Bureau)
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New! Open clinical trials at Children’s Hospital Los Angeles:
- Long-acting factor replacement therapy for PUPs
- Subcutaneous treatment for hemophilia A/B patients with inhibitors
- Understanding the impact of hemophilia on patient’s neurocognitive development
- Gene therapy for severe or moderately severe hemophilia B patients
- TEG technology to learn more about effects of bypassing agents with Hemlibra
- Observing patients undergoing minor surgical procedures while on Hemlibra
- Comparative studies (VWD testing; SHL vs EHL)
- Oral anticoagulation for thrombosis and duration of therapy
- Impact of Disease and Quality of Life studies
For more information about each of the studies above, please contact coagresearch@chla.usc.edu.
OUR HTC NETWORK IS GROWING!
See below for a list of HTC staff that have started since June 2018:
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Children’s Hospital Los Angeles
- Aunnalise Woods, Clinical Research Coordinator
- Patrice Mead, Research Specialist I
- Erin Cooper, Nurse Care Manager
Guam Comprehensive Hemophilia Program
- Nicole Loren, Social Worker
- Cherisse Santiago, Social Worker
Hemostasis and Thrombosis Center of Nevada
- Jerry Fox, Executive Director
- Alison Bartko, Pharmacist
- Melissa Krietz, Accounts Payable/Billing
Kapio’lani Medical Center for Women and Children
- Craig Boddy, MD, Adult Hematologist
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University of California, Davis
- Morgan Tate, Clinical Research Coordinator
University of California, San Francisco
- Stephanie Yee, Adult Program Administrative Assistant
- Victoria Vanderpool, Data Manager/Clinical Research Associate
- Ivy Zi Qian Liu, Research Coordinator
University of California, San Diego
- Peter Aguero, DPT, Physical Therapisy
- Adrian Caranza, Social Worker
Valley Children’s Hospital
- Penny Tang-Mimura, RN, BSN, PHN
- Marirose Larkins, RN, BS (HTC Case Manager)
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Upcoming Webinars & Events
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New! On Wednesday, March 13, 2019, from 12:00 pm – 1:00 pm, Amber Federizo, APRN, FNP-BC (Co-Medical Director at the Hemostasis and Thrombosis Center of Nevada) will present her recently published article titled The Viability and Necessity of APRN‐led Care Models in the Clinical Management of Haemophilia and Other Inherited Bleeding and Clotting Disorders. For more information about the event, contact Ruth Martinez at, RLMartinez@valleychildrens.org. To attend the webinar, go to: https://echo.zoom.us/j/7142211205.
New! On March 29-31, 2019, The Guam Comprehensive Hemophilia Program (GCHCP) celebrates its 20th anniversary with a Medical Symposium (March 29) and Patient/Family Educational Gathering March 30-31. Several WSRHN/Region IX clinicians who helped develop the GCHCP and continue to mentor over the years are featured presenters, including Becki Berkowitz, RN (Hemostasis and Thrombosis Center of Nevada), Doris Quon, MD and Cindy Bailey, DPT (ORthopaedic Hospital), and Judith Baker, DrPH, MHSA (WSRHN/Region IX). NHF featured the founding of the GCHCP in the June 2018 issue of Hemeaware: https://hemaware.org/community-pulse/bleeding-disorders-care-guam-shows-no-htc-island
New! HTC patients were very satisfied with HTC services: Nearly 4800 HTC patients from over 95 of HTCs across the US completed the 2nd National HTC Patient Satisfaction Survey (PSS), including over 470 from our region. Each HTC has a report which compares their patients’ responses to the regional and US responses. One page articles about what we are learning, posters and videos about the 1st and 2nd national PSS are found at this website: www.htcsurvey.com
New! Ultrasound-Guided Joint Injection and Aspiration for Arthritic Conditions and Hemophilia, presented by the UC San Diego School of Medicine has been developed as an educational opportunity to provide training in ultrasound-guided intra-articular needle placement, to perform joint injections and aspirations. Many practices caring for patients with orthopedic conditions, sports injuries or hemophilia have introduced musculoskeletal ultrasound for non-invasive management of painful joints. Adding training to perform needle placement into joints using ultrasound guidance will greatly enhance providers’ ability to manage joint pains by aspiration of joint fluid/blood as well as placement of intra-articular injections. Multiple dates available, register today! https://cme.ucsd.edu/ugjointinjection/
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New! On Saturday, April 6, 2019, Valley Children’s Hospital will be hosting the 2nd Annual Bleeding Disorders Patient and Family Education Day. The goal of the event is to increase the knowledge of patients and families regarding the new trends and treatment for Hemophilia as well as VWD. The educational event is sponsored by the Northern California Hemophilia Foundation (NHF). Spanish interpreters will be available on site during the event.
The Agenda includes an Inspirational Guest Speaker, who will speak about medication compliance, summer camp and more and a moderated medical session conducted by VCH’s providers. An NHF Representative will be on site to conduct an Art Session for kids and their siblings. VCH will also hold a kids and teen session with a Physical Therapist called, “Playing it Safe.” Assistance for Summer Camp Registration will be provided. IV infusion class will be conducted at the end of the session.
For more information on the event and to register, please contact Ruth Martinez at RLMartinez@valleychildrens.org or Marina Ibarra, MSW, mibarra@valleychildrens.org.
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Register Now! The 2019 Annual Conference of the WSRHN will be held on Saturday - Monday, April 13-15, 2019 at the Hyatt Regency Santa Clara. Featured plenary sessions include presentations on the impact of Ageing on hemophilia and other bleeding disorders, immigration laws and their impact on the care of HTC patients, novel therapeutics, and update on gene therapy trials, and federal/regional updates. Registration and hotel reservations must be made by March 6, 2019. For more details regarding the conference, please contact Shalini Vora, svora@c3dibd.org, or Tran Le, tle@c3dibd.org.
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Recent Publications authored by our HTCs:
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- Limjoco J, Thornburg CD. Risk factors for cardiovascular disease in children and young adults with haemophilia. Haemophilia 2018. (5): 747-754.
- Thornburg CD. How I approach: previously untreated patients with severe congenital hemophilia A. Pediatr Blood Cancer 2018. 65(12):e27466. doi: 10.1002/pbc.27466.
- Moyer GC, Bannow BS, Thornburg C, Rosovsky R, Wang TF, Woller S, Thornhill D, Kreuziger LB. Venous thromboembolism: a survey of oral anticoagulant preferences in the treatment of challenging patient populations. Clin Appl Thromb Hemost 2018 Oct 2:1076029618804080. doi: 10.1177/1076029618804080. [Epub ahead of print]
- Smith N, Bornikova L, Noetzli L, Guglielmone H, Minoldo S, Backos DS, Jacobson L, Thornburg CD, Escobar M, White-Adams TC, Wolberg AS, Manco-Johnson M, Di Paola J. Identification and characterization of novel mutations implicated in congenital fibrinogen disorders. Res Pract Thromb Haemost 2018 Jul 2; 2(4):800-811. doi: 10.1002/rth2.12127. eCollection 2018 Oct.
- Thornburg CD, Ducore J. A novel approach to immune tolerance induction in hemophilia A with factor VIII inhibitor. Haemophilia 2018. doi: 10.1111/hae.13646.
- Briggs B, James KN, Chowdhury S, Thornburg C, Farnaes L, Dimmock D, Kingsmore SF; RCIGM Investigators. Novel Factor XIII variant identified through whole-genome sequencing in a child with intracranial hemorrhage. Cold Spring Harb Mol Case Stud 2018. 4(6). Pii: a003525. doi: 10.1101/mcs/a003525.
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The WSRHN would like to send a note to our centers to show our appreciation for your hard work in submitting the HTDS, Comp Care Data Set, and HRSA Progress reports. We are also pleased to announce that all our HTCs completed the 340B recertification process on schedule.
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We encourage all of our HTCs to share news and updates with the network through this quarterly newsletter. Please send images you may want displayed in conjunction with a brief blurb of your organization's/disicplines's updates to Shalini Vora at svora@c3dibd.org, or Tran Le at tle@c3dibd.org. The next set of deadlines would be: May 20, 2019; September 16, 2019; and November 18, 2019.
Editors: Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
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