Registry Disclaimer

Background

The pProm Patient Registry is an observational registry of women who have experienced pProm. It is sponsored by and managed by American Alliance for pProm Support DBA The PPROM Foundation. 

Preterm Premature Rupture of Membranes (pProm) is a factor in 25 to 30 percent of preterm births (). The earlier in pregnancy pProm occurs, the greater the potential latency period. Threats to the pregnancy include placental abruption, umbilical cord prolapse, infection, and insufficient pulmonary development, and preterm delivery. Management of pProm may include immediate delivery, induction, or expectant management.

There are many questions about the course of treatment in pProm pregnancies and post- delivery care of pProm babies in Neonatal Intensive Care Units (NICU’s), as well as the long term outcomes of pProm survivors.

Purpose

The purpose of this registry is to get a better picture of the people impacted by pProm. This includes how pProm is managed in pregnancy and in how pProm neonates are cared for in NICU’s, to identify trends in expectant management, and to detect short term and long term outcomes of those impacted by pProm. This information could be used to design studies for pProm or be used for further research projects.

You are being asked to take part because you have had at least one pProm pregnancy. If you decide to register, you will be asked questions about you and where you live. You will be asked detailed questions about your pregnancy and the care that you received. You may be asked how you have coped with pProm or how you have been impacted by pProm with regards to an economic, physical, psychological, emotional, or financial perspective, etc. You will be asked detailed questions about the outcome of your pProm pregnancy and the challenges your child has because of pProm.

Risks

We maintain a variety of physical, electronic and procedural safeguards to protect information and content entered into the Registry. 

There is a minimal possibility of loss of privacy or confidentiality. However, all records will be kept as private as possible according to all local, state, and federal laws. Only trained members of the Registry Team will be able to link contact information to survey responses. This link will be kept as secure and confidential as possible. We do not solicit personally identifying information outside of your email address and reported city / state / country. 

Benefits

There are no direct benefits to you. In the future, your information could help others with pProm.

Results

We will have reports about what we learn from people who take part in The pProm Registry available at aapprom.org.

Voluntary

The pProm Registry is voluntary and may be revoked at any time. In the event that you would like to remove your response, please email support@aapprom.org and a member of our Registry Team will respond to you.

Questions

Please contact us at erin@aapprom.org for more information about The pProm Registry.

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