The IPAA Center

The Ileal Pouch-Anal Anastomosis Registry at BMC

The Ileal Pouch-Anal Anastomosis (IPAA) Registry is an ongoing research study at the Dempsey Center for Digestive Disorders (CDD) at Boston Medical Center (BMC). The Registry collects data on participating patients' health history. This information is used to better the care of all patients undergoing the IPAA procedure.

Our goals:

• To improve the care and quality of life of patients with an IPAA
• To determine the effectiveness of treatments used before and after IPAA
• To provide information about complications associated with IPAA surgery

What is a Patient Registry?

Patient registries record information about patients with a specific condition or who have received a certain treatment. Registries work by collecting information about these patients, such as medications, procedures and lab results in a database. Researchers then use this information to learn more about the condition or treatment.

Registries help researchers observe the course of the disease, understand variations in treatments and outcomes, and examine quality of life. Information about conditions and treatments is collected in a comprehensive manner, which allows researchers to make generalizations about the patients being studied. Clinicians can use this information to more efficiently follow the health patients. Researchers can use this information to determine if certain treatment strategies lead to healthier patients.

How Are Registries Different from Clinical Trials?

Clinical trials test how well an intervention works compared to other interventions or no intervention at all. Because investigators of a clinical trial are trying to evaluate the effect of the intervention, procedures used in the study are tightly controlled. In contrast to clinical trials, registries do not involve an intervention. Instead, they capture data about how diseases are treated in the real world, rather than just one treatment method. Studies that do not involve an intervention are called observational studies.

What Is the IPAA Registry?

All patients participating in the Ileal Pouch-Anal Anastomosis (IPAA) Registry at BMC have an IPAA. We record information about the patient’s health and treatments used, both before and after the procedure.

We still have many questions about what happens to patients after IPAA surgery.

• How is a patient’s quality of life changed after IPAA?
• Why do some patients get pouchitis?
• Do treatments given prior to surgery affect the patient’s health after IPAA?

What Does Participation in the IPAA Registry Involve?

• Participating in the IPAA Registry will not change how your doctors care for you.
• If you participate, your medical record information related to your IPAA will be placed into the IPAA Registry’s database.
• We will send you a questionnaire once a year. The questionnaire asks about your current health and quality of life. We will enclose a postage-paid envelop to send the questionnaire back to us.
• Research studies are done based on the information in the Registry.
• You can stop participating at any time.

Who Can Participate in the IPAA Registry?

Enrollment in the registry is limited to patients who are currently or have previously been under the care of a physician or surgeon at BMC’s Dempsey Center for Digestive Disorders.

What Should I Do If I Would Like Additional Information?

If you would like information about the IPAA Registry or any of our research, please contact us at: IPAA@bmc.org.

Ethical Approval

The IPAA Registry is approved and reviewed annually by the Boston University Medical Campus (BUMC) Institutional Review Board (IRB). IRBs are formal committees that review and approve research involving human subjects. More information about IRBs may be found at Wikipedia.org.