What We Do
What is the purpose of the Home TPN Registry?
The possibility to provide energy and nutrients directly into the blood stream using TPN allows people with intestinal failure or those who cannot eat or absorb enough nutrients from their food to survive for extended periods of time. Unfortunately, TPN also has some side effects, especially when given over a long time. Common problems are of metabolic, infectious and mechanical nature, for example line infections or liver disease.
The Canadian Home TPN Registry is collecting demographic and clinical data on the clients in our participating centers who receive Home TPN. The goal is to find out, which factors determine survival, complications and TPN-dependency in order to be able to improve care for our clients. Therefore, we are also comparing practice and standards of care between Home TPN programs throughout Canada.
How does the Registry work?
All clients in the participating programs are asked whether they want to be part of the Home TPN registry. Participation is completely voluntary.
Home TPN staff from participating programs follows the participants and records their data into the registry. The first data entry (baseline) is done at the time the client agrees to participate and after that every 2 years.
The data collected remains completely confidential and can only be accessed as a whole by the individual programs for database comparisons. The programs are able to compare their own program to all the other programs as a whole, but they cannot compare between specific Home TPN programs.
The data collected in the registry include information on the clients' demographics, nutritional assessment, medications, indications for Home TPN, gastrointestinal anatomy post-surgery, TPN composition, current blood work, vascular access and the frequency and causes for hospitalizations. The data is recorded until the discontinuation of TPN or until a client leaves to program.
The registry also includes information about the TPN teams, the number of clients enrolled in the program, diagnosis and reasons for Home TPN, source of program funding, geographical coverage, home care utilization and Home TPN providers.
The analysis of the data collected will help determine patient populations and factors for Home TPN complication as well as establish standards of practice and develop future collaborative studies, all of which can greatly benefit the Home TPN clients across Canada.