International Registry for Intraductal Papillary Mucinous Neoplasma
International Registry for Intraductal Papillary Mucinous Neoplasma
A centralized web-based database will be used to track patients with IPMN lesions of the
 pancreas to study natural history and risk factors for malignant transformation in this
 multi-center study.
Intraductal papillary mucinous neoplasms of the pancreas (IPMN) are increasingly recognized
 in clinical practice. They represent a unique clinicopathologic entity that is characterized
 by mucin production, cystic dilation of the pancreatic ducts, and intraductal papillary
 growth. The World Health Organization recognized IPMN as a distinct clinical entity in 1996.
 Recent literature suggests that up to 45% of IPMN are malignant and should be resected;
 however these data are based on larger, primarily symptomatic lesions. Several studies have
 been published in the recent literature reporting single-center experience with IPMN
 resections and observations with small numbers of patients. The natural history of these
 lesions and risk of malignancy is still vague. Consensus guidelines for management of IPMN
 were published in 2006, but noted the limited knowledge available in six areas: definition
 and classification, preoperative evaluation, indication for resection, method of resection,
 histological data on frozen section/positive margins and specimen processing, and finally,
 method of follow-up. Speaking to this need, we propose an international registry for
 multi-center collaboration in the above areas of need in IPMN research and clinical
 management. This will be through a centralized, web-based registry with data entered by each
 center in a de-identified way to protect confidentiality.

 The data collected from the IRB approved retrospective chart review IRB# 07-007202 will be
 incorporated into this data base. Any patients that participate in the prospective study will
 be consented with HIPPA consent prior to collection of data.
Inclusion Criteria:

 -  Suspected IPMN based on the consensus guidelines (7)

 -  Endoscopic ultrasound imaging at baseline examination

 -  Either surgical histology or clinical follow up with EUS, MRI, or CT scan for at least
 1 year

 -  Cases previously collected that meet the above criteria will be allowed

 Exclusion Criteria:

 -  Patients who do not meet the above inclusion criteria