The PPROM Patient Registry is a web-based patient reported outcomes (PRO) observational study of women who have experienced PPROM. It is sponsored by and managed by American Alliance for PPROM Support DBA The PPROM Foundation. It is a registered clinical trial NCT02997345).
Preterm Premature Rupture of Membranes (PPROM) is a factor in 40 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), as well as the long term outcomes of PPROM survivors.
The purpose of this registry is to get a better picture of the patient experience in 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.
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.
This information may be used to design studies for PPROM or be used for further research projects. As the registry is a living database, you may be contacted to update information following completion of your entry. Registry participants may be contacted by the Registry Manager in the event that additional information is needed or there is a research opportunity available to you.
We maintain a variety of physical, electronic and procedural safeguards to protect information and content entered into the Registry.
In the event that an investigator requests information for research purposes, the data will be shared de-identified.
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 the principle investigator and authorized members of the Registry administrators will be able to link contact information to survey responses. This link will be kept as secure and confidential as possible.
We do not collect personally identifying information aside from your reported email address and reported city / state / country. We are not collecting medical records at this time.
There are no direct benefits to you. In the future, your information could help others with PPROM.
We will have reports about what we learn from people who take part in The PPROM Registry available at aapprom.org.
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 firstname.lastname@example.org and a member of our team will respond to you.
Please contact our Registry Manager at email@example.com for more information about The PPROM Registry.