CDC Updates

Institutional review documentation, participant resources, and additional HTC guidance for the Community Counts COVID-19 Data and Specimen Collection are delayed and will not be sent until January 2023. Some of these documents are still undergoing approval and Spanish language translation at CDC. HTCs will be emailed these documents as soon as possible.  

For more information on project details and forthcoming documents, please see COVID-19 CC Registry Information for HTC Providers and Staff and the newly added COVID-19 Antibody Testing FAQs Information for HTC Providers and Staff. 

Hemostasis and Thrombosis Data Set (HTDS) Reporting is due on February 1, 2023. The HTDS is a summary report of all patients receiving care at federally funded US HTCs. The HTDS is compiled and generated using ATHN’s Clinical Manager. The report must be completed annually and submitted to each HTC's designated Regional Core Center. ATHN (American Thrombosis and Hemostasis Network) posted the recorded webinar on the ATHN Support website in the HTDS Reports section. Questions regarding the completion of this report can be sent to Nicole Crook at ncrook@c3dibd.org. 

340B Recertifications 

The 2023 Health Resources and Services Administration (HRSA), Office of Pharmacy Affairs (OPA) 340B Program Recertification period for HRSA Grantees and Indian Health Service is scheduled for January 30-February 27, 2023. There will be a recertification webinar held the week prior to the start date.  

In order to recertify, Authorizing Officials (AOs) and Primary Contacts (PCs) must set up a user account in the 340B Office of Pharmacy Affairs Information System (340B OPAIS). Failure to set up user accounts will result in not being able to view accounts or conduct recertification, thus removal from the 340B Program. AOs and PCs must create individual user accounts, and they will not be able to share access. All active 340B IDs associated with an AOs user account must be updated in order for recertification to be completed by the established deadline. HRSA also has information and tutorials available at https://www.hrsa.gov/opa/340b-opais/index.html. For regional supports, contact Lori Gillespie at LGillespie@c3dibd.org.  

Grant Opportunity

Hemophilia Alliance Foundation 2023 Project and Patient Assistance Grants application deadline is January 31, 2023. The application must be submitted directly on the Hemophilia Alliance Foundation website. The cycle of funding currently available is for the following two types of grants: (1) Project grants meant to enable eligible organizations to build on their capacity to achieve and expand their mission, (2) Patient assistance grants meant to render direct patient/family financial assistance through eligible organizations to alleviate financial hardship due to, or which impacts, the management of a bleeding or thrombotic disorder. For more information and to apply go to: https://hemophiliaalliancefoundation.org/grant-information-main/project-patient-assistance-grant-information 

The WSRHN welcomed new co-chairs to the Data Manager/Clinical Research Data Coordinator, Physical Therapist, Nurses and Nurse Practitioners Working Group. Below are the updated list of co-chairs. 

340B/Pharmacy 

• Lori Gillespie, LGillespie@c3dibd.org  
• Marisa Ng, MNg@stanfordchildrens.org  
• Mindy Chuang, MChuang@stanfordchildrens.org  
• Binh Ngo, b7ngo@ucsd.edu  

Administrators 

• Kim Schafer, klschafer@ucdavis.edu  
• Sachi Suzuki, sachiko.suzuki@ucsf.edu  

Data Managers/Clinical Research Coordinator 

• Christina Ashburner, cashburner@c3dibd.org  
• Jacquie Limjoco, jlimjoco1@rchsd.org 

Nurses and Nurse Practitioners 

• Mary Lesh, LeshM@ucsf.edu  
• Jennifer Foster-Fausett, Jennifer.Foster-Fausett@ucsf.edu 
• Jennifer Donkin, jdonkin@chla.usc.edu 
• Judith Lea, jlea@stanfordchildrens.org 
• Katrina Unpingco, Katrina.Unpingco@ucsf.edu 

Physical Therapy 

• Pattye Tobase-Zimmerman, Patricia.Tobase@ucsf.edu  
• Grace Hernandez, GHernandez@c3dibd.org 
• Cindy Bailey, cbailey@mednet.ucla.edu 

Social Work 

• Damia Dillard, djdillard@@ucdavis.edu  
• Denise Lowery, dnlowery@ucdavis.edu  

Best Practices for Accessing Residential Substance Use Disorder Treatment for Individuals with Bleeding Disorders is a product of the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), whose mission is to advocate for access to appropriate residential substance use disorder and mental health (MH) treatment facilities for all individuals with bleeding disorders. Historically, many residential substance use disorder facilities have denied admittance to individuals with bleeding disorders. The lack of access to residential addiction treatment facilities can have severe, even fatal, outcomes for bleeding disorder patients in acute need of help with their addiction. This document provides best practices and resources for HTCs endeavoring to refer a BD patient successfully. 

Lee D, Le AO, Meganck M, Chamberland S, Pai A. Adding a Clinical Hemophilia Pharmacist to the Hemophilia Comprehensive Care Model Improves Health Care-Related Outcomes and Drug-Related Costs in an Integrated Health Care System. Perm J. 2022 Sep 14;26(3):90-93. doi: 10.7812/TPP/21.192. Epub 2022 Aug 21. PMID: 35989427; PMCID: PMC9683744. 

Roberts JC, Kulkarni R, Kouides PA, Sidonio RF Jr, Carpenter SL, Konkle BA, Wu J, Ullman MM, Curtis R, Baker JR, Crook N, Nichol MB. Depression and anxiety in persons with Von Willebrand disease. Haemophilia. 2022 Dec 14. doi: 10.1111/hae.14725. Epub ahead of print. PMID: 36516311. 

Partners in Bleeding Disorders Education offers comprehensive education, both in person and online, for HTC staff, including disciplines such as nursing, physical therapy, and social work. Continuing education credits are offered for selected courses. For more information, click here.