Iron deficiency, with and without anemia, is the most common micronutrient deficiency around the world. People with bleeding disorders have a higher risk of developing these conditions due to blood loss from bleeding episodes. Until now, there were no standardized guidelines for screening for iron deficiency in people with bleeding disorders. That has changed with the release of NBDF’s Medical and Scientific Advisory Council’s (MASAC) new recommendations that give doctors and other clinicians clear guidance on how to address this issue.
The recommendation, which is available in full on NBDF’s website, recommends that all individuals with an inherited bleeding disorder, including hemophilia, von Willebrand disease, rare factor disorders and platelet disorders, be routinely and periodically screen for iron deficiency and anemia irrespective of sex, age, or bleeding disorders severity. Further, the document recommends a multidisciplinary approach to laboratory testing for iron deficiency and anemia, “including collaboration between primary care providers and specialists to ensure timely diagnosis, monitoring, and resolution of iron deficiency.”
When considering the need for the recommendation, MASAC found that only 4% of 10,527 females with bleeding disorders had been screened for iron deficiency yet 72% of the of the individuals met criteria for iron deficiency. This, along with other studies cited in the MASAC document, shows that prevalence of iron deficiency is significantly underestimated.
“Having low iron can affect many different aspects of a person’s health and quality of life,” said Glaivy Batsuli, MD, a pediatric hematologist at the Bass Center for Childhood Cancer and Blood Diseases at Lucile Packard Children’s Hospital in Palo Alto, CA. Dr. Batsuli is a member of NBDF’s MASAC and is one of the co-authors of the recommendation. “There was no guidance or recommendation on screening before now; these recommendations were created to fill that gap.”
Instances when a person with a bleeding disorder may be at a higher risk for iron deficiency are also addressed by the recommendation. For pregnant women, the recommendation states that people be screened at least once in the first trimester and then again in the second or third trimester. Postpartum iron deficiency, the document states, “is underrecognized yet associated with fatigue, depression, and negative impact on cognitive functioning, which can ultimately affect maternal-infant bonding and maternal care of the infant.” The document recommends that individuals be screened for iron deficiency and anemia after delivery, and 6-12 weeks postpartum.
The MASAC recommendation was published in the peer-reviewed journal, Haemophilia, in March of 2026. This is the first time a MASAC recommendation has appeared in the journal. “The recommendations were submitted because of Haemophilia’s reach to the bleeding disorders community, including clinicians and individuals with bleeding disorders,” said Dr. Batsuli. “It is an open-access article. We wanted these recommendations to be easily accessible to everyone, from lived experience experts to medical providers to payors. We hope they will empower patients to ask more questions about their own health, such as their iron status, and how to improve it.”
The complete document, which includes recommended tests, specific hemoglobin and ferritin levels, diagnostic considerations for screening, and management of iron deficiency and anemia, can be found on NBDF’s website or in Haemophilia.
