Registry for Patients Receiving Intravenous Nutrition at Home
Home Total Parenteral Nutrition (HTPN) in Canada: A New Website Based Patient Registry
The purpose of study is to build a Canadian HTPN Registry to collect pertinent demographic
and clinical data on the HTPN population in Canada and to determine the factors affecting
survival, complications and TPN-dependency. These results will help establish standards of
practice and develop future multi-center studies. This will greatly benefit the HTPN patient
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).
Parenteral Nutrition, Home
parenteral nutrition, complications, indications, long-term administration, HTPN
University Health Network, Toronto
University Health Network, Toronto, Canadian Nutrition Society, Calea Inc., Baxter Healthcare Corporation, Royal Drugs, Inc., Excelsior Medical Corporation, Bayshore Home Health
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