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: Living with Alloimmunization: Impacts on Daily Life

When did you first become aware of concerns about alloimmunization? (e.g., while trying to conceive during or after pregnancy?)

What aspects of alloimmunization, particularly the physical, emotional and psychosocial aspects, have had the most significant impact on you or your loved one’s life?

How does alloimmunization or concern about alloimmunization affect you or your loved one’s daily life on your/their best and most difficult days?

How has the ability to cope with alloimmunization or fertility loss changed over time?

Are there activities, goals, or life plans that have been limited, delayed, or changed because of alloimmunization or alloimmunization-related decisions involving you or your loved one?

When you think about the future, what worries or uncertainties concern you most? (e.g., reproductive options, long-term health, emotional or financial sustainability, relationships and intimacy, family planning)

Topic 2: Current and Future Alloimmunization Treatment Approaches

What treatments and approaches have you or your loved one used? (e.g., These can include pharmaceutical, phototherapy, transfusions, or other interventions)

How well do these treatments address your or your loved one’s alloimmunization concerns?

What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life? (e.g., bothersome side effects, going to the hospital for treatment, emotional burden, etc.)

How did you or your loved one weigh risks against the need to proceed with medical treatment?

Would you participate in a clinical trial for new alloimmunization therapies? Why or why not?

Short of a cure, what improvements would matter most to you or what types of therapies or approaches would you like to see from new alloimmunization treatments? (e.g., greater predictability of effectiveness, reduced treatment burden, fewer side effects/risks)

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