Registry for Patients Receiving Intravenous Nutrition at Home

The HTPN Registry is website based. Only users inside of Canada will be able to access the website. All data is held in Ontario, Canada and is governed by Ontario and Canadian privacy and security laws. The entry point into the registry will be through a website www.htpnregistry.ca, using a specific HTPN program password for data entry. A code and date of birth will be used to identify each patient. Patient data will be kept confidential and be entered by a member of the TPN team from each participating program. Participating programs will have access to their own database and will be able to compare their patient population to the one of the entire registry. Data entered into the registry will include: 1) Patient demography 2) Nutritional assessment 3) Medications 4) Indications for HTPN 5) Gastrointestinal anatomy following surgeries 6) HTPN regimen 7) Current blood work 8) Vascular access 9) Hospitalizations 10) Survival, 11) Liver complications 12) Metabolic bone disease 13) quality of life. In addition, information regarding each HTPN program will be captured: organization of the TPN team, number of patients under the program, diagnosis and reasons for HTPN, source of funding, geographical coverage, home care utilization, providers. Data will be entered every two years by the one or more HTPN staff monitoring the patients. The data can be entered directly into the website or case report forms can be used to collect the data from the patient charts and facilitate data input into the website.

All patients will be followed prospectively until discontinuation of TPN or death. Descriptive statistics will be performed.

For the entire HTPN population, probability of survival, chronic cholestasis, complicated home parenteral nutrition related liver disease, line infection and metabolic bone disease will be calculated using the Kaplan-Meier method. As of February 2014, 433 patients (85 from UHN) have been entered into the Canadian HTPN registry. The recruitment and data collection is expected to continue for at least 5 more years (until 2019). Participating HTPN programs are: Toronto (Toronto General Hospital, St. Michael's Hospital), Hamilton (Hamilton Health Sciences),Winnipeg (St. Boniface General Hospital), Edmonton (Capital Health/University Of Alberta), Calgary (Foothills Medical Centre), British Columbia (BC Home Parenteral Nutrition Program) and Montreal (McGill University).

• Patient characteristics [Time frame: baseline]
• Medications [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Indications for HTPN [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Gastrointestinal anatomy [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• HTPN regimen [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Current blood work [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Vascular access [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Hospitalizations [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Survival [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Liver complications [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Metabolic Bone Disease [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]
• Quality of life based on Karnofsky performance scale [Time frame: bi-annually up to 10 years, discontinuation of HTPN or death]