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Original Research

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate

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Pages 71-86 | Received 07 Dec 2022, Accepted 30 Jan 2023, Published online: 15 Mar 2023

Figures & data

Figure 1. Working Group 4 research priorities for the health of people who have or had the potential to menstruate schematic of community-identified areas for priority research framework.

GT: gene therapy, BD: bleeding disorder, POC: point-of-care, PPM: people who have or had the potential to menstruate QoL: quality-of-life
Figure 1. Working Group 4 research priorities for the health of people who have or had the potential to menstruate schematic of community-identified areas for priority research framework.

Table 1. Members of working group 4.

Figure 2. Six focused research domains identified by WG4, and the core issues examined for each.

PRO: patient-reported outcome, QoL: quality-of-life
Figure 2. Six focused research domains identified by WG4, and the core issues examined for each.

Figure 3. Plot of feasibility, impact, and risk scores of prioritized questions in each focused research domain.

Label numbers correspond to those in , and segmented circles indicate data points from different domains with identical coordinates.
Figure 3. Plot of feasibility, impact, and risk scores of prioritized questions in each focused research domain.

Figure 4. Venn diagrams of areas of impact of the prioritized research questions in each focused research domain a. Lifespan sex biology b. Pregnancy and the post-partum context c. Uterine physiology and bleeding research questions d. Bone and joint health e. Health care delivery f. Patient-reported outcomes and quality-of-life.

D&C: dilation and curettage, HMB: heavy menstrual bleeding, PD: pharmacodynamics, PK: pharmacokinetics, IUD: intrauterine device
Figure 4. Venn diagrams of areas of impact of the prioritized research questions in each focused research domain a. Lifespan sex biology b. Pregnancy and the post-partum context c. Uterine physiology and bleeding research questions d. Bone and joint health e. Health care delivery f. Patient-reported outcomes and quality-of-life.

Table 2. Priority research questions in each focused research domain of the health of people who have or had the potential to menstruate, and their total feasibility-impact-risk score.

Table 3. Examples of potential collaborators in efforts to overcome barriers to important research to advance the health of people who have or had the potential to menstruate with inherited bleeding disorders.

Supplemental material

Supplemental Material

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