Alloimmunization Research and Publications
Stakeholder Engagement Guide for Patient Advocacy Groups
This resource is intended as a guide to facilitate effective stakeholder engagement with special consideration to rare disease patient advocacy groups. The engagement tools outlined below stem from the effective engagement of a diverse multi-stakeholder convening to discuss the disease-specific considerations, research needs, and barriers and facilitators to research in the community of patients, caregivers, clinicians, researchers and industry members affected by and interested in red cell alloimmunization/hemolytic disease of the fetus and newborn (HDFN).
WHITEPAPER
AHF Report on Alloimmunization/HDFN Community Needs and Patient-Centered Outcomes Research Solutions
Review our whitepaper reviewing findings from a series of virtual meetings AHF held with patients, clinicians, industry and researchers to discuss the needs and barriers of the alloimmunized community, along with proposed research solutions. This effort was made possible by the Patient Centered Outcomes Research Institute Engagement Award Program.
RESEARCH
Receipt of RhD-positive whole blood for life-threatening bleeding in female children: A survey in alloimmunized mothers regarding minimum acceptable survival benefit relative to risk of maternal alloimmunization to anti-D
Abstract
Background: Low-titer group O whole blood (LTOWB) for treatment of hem- orrhagic shock sometimes necessitates transfusion of RhD-positive units due to short supply of RhD-negative LTOWB. Practitioners must choose between using RhD-positive LTOWB when RhD-negative is unavailable against the risk to a female of childbearing potential of becoming RhD-alloimmunized, risking hemolytic disease of the fetus and newborn (HDFN) in future children, or using component therapy with RhD-negative red cells. This survey asked females with a history of red blood cell (RBC) alloimmunization about their risk tolerance of RhD alloimmunization compared to the potential for improved survival following transfusion of RhD-positive blood for an injured RhD negative female child.
CONFERENCE ABSTRACT
Alloimmunization in Pregnancy: Quality of Care, Mental Health Effects and Impact Upon Daily Life
CONFERENCE POSTER
