The PPROM Registry is a Patient-Reported Outcomes (PRO) registry that collects pregnancy history, information related to PPROM, Expectant Management practices, maternal and neonatal interventions, outcomes, demographics and mental health information. The information collected is aligned with standards and definitions used in most current research efforts and accessible to the most number of researchers.
Once approved, you will be able to access and analyze de-identified data, search for a study cohort, or use our clinical study recruitment services. The trust patients place in us is uncompromised, therefore, clinical studies must be IRB-approved and evaluated by our internal review board to ensure patient safety and relevance to our mission.
If you would like us to collect new information in the registry or are interested in submitting a proposal to access registry data, please send an email to the Registry Manager at firstname.lastname@example.org.
How to access the data or start a new study:
- Contact the Registry Manager at email@example.com to discuss your study ideas and needs.
- Submit a proposal application for our internal review.
- Sign a data use agreement.
- Pay a cost-recovery fee. This is not intended to be a barrier to research as we only seek to recover the costs we’ve accrued to gather and maintain this data.
- Provide evidence of IRB or other ethical approval or exemption.
Clinical Study Recruitment Services
The PPROM Foundation has a large network of stakeholders invested in outcomes related to PPROM. If you are seeking participants for a research study or focus group, we can assist. Contact our Registry Manager at firstname.lastname@example.org for more information.