MASAC Meeting Minutes

August 23, 2025

Aurora, CO

 

Call to Order Dr. Dunn

Dr. Dunn called the meeting to order at 8:09 am.

 

Chair Report

 

Dr. Dunn welcomed everyone to the meeting and started with a brief history of MASAC. She welcomed the new members: Dr. Suzanne Gilboa, Director National Center of Birth Defects and Developmental Disabilities at CDC; Lucy Ramirez, incoming SWWG chair; and Brittany Savage, incoming NWG chair. Members rotating off the council were Maureen Baldwin, Deron Burton,

Shannon Meeks, Mark Redding, Kathaleen Schnur, and Kelly Tickle. She thanked them for their service.

Dr. Dunn discussed the new conflicts of interest disclosure form in MASAC’s Microsoft Teams channel. She said everyone would submit the form annually prior to BDC or if a significant new conflict arose. The submissions would be reviewed by NBDF’s Chief Medical Officer.

A new policy document was shared with all the members.

Dr. Dunn discussed the top five priorities for 2025. For the process of reviewing and revising all MASAC documents, she said the project was started with 102 documents, eight had been retired or revised, 12 were current but needed to be reformatted, and two were to be voted on at the meeting. For the priority of guidance on rebalancing agents, a discussion and a vote were scheduled for this meeting. For guidance on diagnosis and management of platelet dysfunction, Dr. Lambert was chairing a task force. For the topic of laboratory management of novel therapies, Dr. Lambert was also chairing a task force. In the area of engaging females in clinical trials, an NBDF/FDA summit was scheduled for October 15-16, 2025.

Dr. Dunn called attention to MASAC Document #90, “Revised Recommendation Regarding Treatment of HCV in HIV Coinfected Individuals with Hemophilia and Other Inherited Bleeding Disorders.” After reviewing with others, Dr. Dunn proposed the document be retired. MASAC agreed.

Dr. Dunn presented MASAC Document #129, “Resolution Regarding Emergency Supply of Factor Concentrate.” After discussion, it was also voted to be retired.

 

Authorship Policy for Official Documents              Dr. Dunn

 

Dr. Dunn discussed the importance of a new authorship policy that was being developed. She said it was important as MASAC engaged multiple experts/disciplines within and outside MASAC to produce guidance so that credit for contributions can be given, and academic productivity can be documented.

A policy document was shared with all the members, and she said to qualify for authorship, individuals must meeting all the criteria.

 

Genetic Counseling Working Group            Dr. Dunn

 

Dr. Dunn introduced a new working group for genetic counselors.

She said genetic testing was increasingly utilized for diagnostic purposes and gene-based therapies were available and rapidly advancing, but there was not an established MASAC working group.

Established working groups receive NBDF support to facilitate meetings and conference attendance

The document was approved.

 

NBDF Update               Mr. Gattone

 

 

Health Access and Strategic Innovation (HASI) Update              Ms. Melton

 

 

Anti-Tissue Factor Pathway Inhibitors in Hemophilia – approved        Dr. Lewandowska

 

 

Update to MASAC 275 - "MASAC Recommendations Regarding Physical Therapy Management for the Care of Persons with Bleeding Disorders"    Dr. S Dunn

 

 

MLOF Presentation  Dr. Johnsen

 

 

Geriatrics Task Force             Dr. Kouides; Dr. Lewandowska; Ms. Schnur; Dr. Roberts

  • Prostate Health approved

    •   Atrial Fib Document approved with changes

  • Orthopedic Surgery approved

  • Psychosocial Addendum approved

 

Advocacy Update      Mr. Schaefer; Ms. Koulianos

 

 

WFH Update Dr. Pierce

  • Reasons for the slow uptake of gene therapy

  • Reinvestment cycle for therapies employing new technologies

 

Product Document  Dr. Lewandowska; Dr. Staber

 

 

Hemophilia Alliance               Mr. Blake

 

 

NBDF Education Department          Ms. Hayes; Ms. Nammacher

 

 

Nursing Projects Update     Dr. Tickle

 

 

National Bleeding Disorder Clinical Practice Recommendations for Hemophilia Treatment Center (HTC) Social Workers - The Role of Social Workers in Hemophilia Treatment Centers in the United States Ms. Schnur

 

 

ATHN Update                Dr. Singleton

 

 

MASAC Document #77 “Recommendation Regarding Neonatal Intracranial Hemorrhage and Postpartum Hemorrhage” Update               Dr. Singleton

 

 

Research Round Table Update        Dr. Recht

 

Pathway to Cures      Ms. Willey

 

 

Voted on SW document approved

 

Anemia Screening Document          Dr. Batsuli

 

 

FDA Update   Dr. Kaushal

 

 

NHLBI Update              Dr. Thornburg

 

 

New and Deferred Business              Dr. Dunn

 

Adjourn             Dr Dunn