About This National Study
The Perinatal Outcomes in Developmental Disabilities (PODD) Study is a research project funded by the National Institutes of Health.
We are conducting a national study focused on improving pregnancy and postpartum care for people with intellectual and developmental disabilities (I/DD).
As part of this work, we are inviting a selected group of obstetric clinicians from across the country to share their experiences through a short survey.
More people with I/DD are becoming pregnant, yet there is very little guidance to help obstetric clinicians tailor care to meet their needs.
Yes. Patients with I/DD may need communication supports, sensory or cognitive accommodations, and more structured care coordination than current prenatal and postpartum models typically provide.
Many clinicians have expressed a desire for clearer tools, training, and resources for communication, counseling, consent, and care planning for patients with I/DD.
Most studies are small, limited to single locations, or do not include input from obstetric clinicians. There has been very little national work designed to understand day to day clinical practice or to identify practical improvements.
By understanding barriers and facilitators to care, we will create new information for clinicians and for guiding bodies such as ACOG.
This can inform priorities for training, adaptation of resources and materials, and development of needed care and policy guidelines at state and national levels.
What we hope to learn from clinicians
Drawing from the survey content, we hope to better understand:
- How often clinicians provide obstetric or postpartum care to patients with I/DD.
- How confident clinicians feel in different aspects of care for this population.
- How clinicians identify or assess possible I/DD during early encounters.
- What communication strategies and accommodations are used in real practice.
- How practices support sensory, cognitive, and communication needs.
- How clinicians approach consent, decision making, and care coordination.
- How advocacy roles differ among patients, families, caregivers, and staff.
- What changes clinicians believe would improve care for pregnant and postpartum patients with I/DD.
Your insights will help develop practical guidance and tools that support clinicians and improve care quality nationwide.
If you received an invitation to participate
If you received a survey invitation by mail or email, you can begin by clicking the link provided in your email or scanning the QR code in your letter.
Your responses are extremely important. Hearing directly from clinicians like you is essential to understanding real practice, identifying what is needed most, and guiding improvements in care for pregnant and postpartum patients with I/DD nationwide.
If you have questions about the study or your invitation, please contact us at poddstudy@drexel.edu.
Thank you from the study team
Lindsay Shea, MS, DrPH (PI), Drexel University
Diana Schendel, PhD (Co-I), Drexel University
Irene Headen, PhD, MS (Co-I), Drexel University
Steven Marcus, PhD (Co-I), University of Pennsylvania
Elizabeth Howell (Co-I), University of Pennsylvania
Nia M. Bhadra-Heintz, MD, MS (Co-I), University of Pennsylvania
Carli Friedman, PhD (Co-I), The Council on Quality and Leadership
Monika Mitra, PhD (Co-I), Brandeis University