Submit a Written Comment

Submit a comment below on the topics we will be discussing in advance of the EL-PFDD meeting. Comments should be submitted individually.

The comments collected may be shared during the MAF EL-PFDD and may also be used in the final Voice of the Patient report (with identifying information removed).


Topic 1: Health Effects and Daily Impacts of Maternal Alloimmunization and HDFN

1. Of all the symptoms, experiences, and challenges related to maternal alloimmunization and HDFN, what had the most significant impact on your life, pregnancy, or family?
2. Are there specific activities or parts of pregnancy, birth, or early parenthood that you could not experience as fully as you would have liked because of alloimmunization or HDFN?
3. As it relates to your experience with alloimmunization and HDFN, what did a good day look like? What did a difficult day look like?
4. How have your condition, care experience, and its impact changed over time, during one pregnancy or across multiple pregnancies?
5. What worried you most during your pregnancy and your baby’s care journey?
6. Looking back on your experience, are there symptoms, long-term effects, or impacts on your child or family that you feel are important to patients but are not currently measured or considered in research or clinical trials?
7. When you think about your baby’s health and future, what outcomes mattered most to you? How did you weigh difficult decisions when outcomes such as survival, invasive treatments, and long-term development were all important considerations?

Topic 2: Current Approaches to Treatment and Care

1. What would a meaningful reduction in treatment burden have looked like for you? For example, would one fewer fetal procedure, one fewer transfusion, fewer appointments, or another change have made a meaningful difference?
2. What types of monitoring, treatments, or interventions did you receive during pregnancy and after birth to help manage alloimmunization and HDFN?
3. How did your treatment regimen or care plan change over time, and why?
4. How well did your monitoring and treatments address the most significant challenges you faced or improve your pregnancy and your baby’s outcomes?
5. What were the most significant downsides or burdens associated with your care and treatments?
6. Short of a complete cure, what would an ideal treatment or approach to managing alloimmunization and HDFN look like?
7. Thinking about your pregnancy, what did the monitoring and treatment process look like for you? How did frequent fetal monitoring, Maternal-Fetal Medicine visits, intrauterine transfusions, or other interventions affect your daily life and your family?

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