RecruitingOBSERVATIONAL

Registry for Patients Receiving Intravenous Nutrition at Home

This study is creating a special, secure database in Canada for adults who receive home parenteral nutrition (through a vein). It gathers important health information about these patients, such as their overall health, medicines they take, why they need this nutrition, and any health problems they experience. Researchers want to understand what helps people live well and what challenges they face. The information is kept private and will be used to improve the care and support available for all patients using home parenteral nutrition in the future. It will also help health professionals develop better guidelines and plan future research projects to make life better for these individuals.

At a glance

Status

Recruiting

Sponsor

University Health Network, Toronto

Enrolment target

1,000

Start

01 Dec 2005

Estimated completion

01 Dec 2029

Parenteral Nutrition, Home

What is this study about?

Imagine a special online notebook, but for adults in Canada who receive their nutrition directly into a vein at home. This study is building that notebook, which is called a registry. It's a secure place where medical teams can confidentially record information about people on home parenteral nutrition (often called HTPN).

The main idea is to gather details about everyone in Canada using this type of feeding. This includes things like their general health, what medicines they're on, why they need HTPN, and how their bodies are coping. The goal is to learn from this real-world information to understand common issues, what keeps people healthy, and what might make them dependent on HTPN long-term. By bringing all this information together, doctors and healthcare providers can start to see bigger patterns.

This registry is really important because it will help improve the care for thousands of Canadians. By understanding the challenges and successes of people on HTPN, health professionals can create better guidelines for treatment, plan future research to find even better solutions, and ultimately make sure everyone gets the best possible support and care. All the information is kept secure and private, following strict Canadian laws.

Key takeaways

It's a way to gather vital health information about adults on home intravenous nutrition (HTPN).
No changes to your regular medical care are involved.
Your privacy is strongly protected; your information is handled with strict confidentiality.
The goal is to improve care and create better guidelines for all HTPN patients in Canada.
It's for Canadian adults aged 18 and over who receive HTPN.

Who may be eligible?

This study is for adults over 18 years old who are currently receiving their nutrition through a vein at home, a treatment often called Home Total Parenteral Nutrition (HTPN).

If you are an adult in Canada and your medical team provides you with nutrition directly into your bloodstream at home, you could be included in this registry.

There are no specific reasons why someone would be excluded once they meet the main criteria of being an adult on home intravenous nutrition.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you receive your nutrition through a vein (intravenously) at home?
Are you in Canada?
Are you currently receiving this type of home nutrition?

Answer every question to see your result.

What does participation involve?

If you are eligible, your participation means that your medical team will regularly enter information about your health and treatment into a secure website. This data comes directly from your existing medical records and observations made by your healthcare team. You won't need to do anything extra or have any additional visits or assessments for the study itself.

The information collected includes details like your general health, the specific type of home nutrition you receive, any other medications you take, how your body is doing, and if you've been to the hospital. This data will be updated about every two years. Your medical team will continue to follow your health as they normally would, whether you stop receiving home nutrition or continue with it long-term. The study itself doesn't involve any new treatments or changes to your care.

Potential risks and benefits

This study doesn’t involve any changes to your medical care or treatments, so there are no direct medical risks to you. The main benefit is that by sharing your health information (confidentially), you are helping to improve the understanding of home intravenous nutrition. This can lead to better care, guidelines, and future research that will benefit many patients like yourself. All your personal data is kept highly confidential and is protected by strict privacy laws, with only coded information identifying you.

Locations (10)

Foothills Medical Centre
Verified postcode
Calgary, Canada· Recruiting
Captial Health/University Of Alberta
Verified postcode
Edmonton, Canada· Recruiting
BC Home Parenteral Nutrition Program
Verified postcode
Vancouver, Canada· Recruiting
St. Boniface General Hospital
Verified postcode
Winnipeg, Canada· Recruiting
Hamilton Health Sciences
Verified postcode
Hamilton, Canada· Recruiting
St. Michael's Hospital
Verified postcode
Toronto, Canada· Recruiting
Hopital St-Luc
Verified postcode
Montreal, Canada· Recruiting
McGill University
Verified postcode
Montreal, Canada· Recruiting
Hotel-Dieu de Quebec
Verified postcode
Québec, Canada· Recruiting
Saskatchewan Adult HTPN Program
Verified postcode
Regina, Canada· Recruiting

Common questions

What is Home Parenteral Nutrition (HTPN)?

It's when you receive all or some of your nutrition directly into your bloodstream through a vein, and you do this at home.

Will my personal details be shared?

No, your data is kept confidential and protected by strict Canadian privacy laws. Only a coded number and your birth date identify you, not your name.

Do I have to do anything extra for this study?

No, you don't need to do anything. Your medical team will share your health information from your regular medical records with the study.

How will this study help patients like me?

By understanding more about people on HTPN, doctors can develop better treatment guidelines and future studies, leading to improved care for everyone.

Who can access my information?

Only specific, authorised members of your TPN care team and the study researchers in Canada can access the data, which is kept in a secure database in Ontario.

How to find out more

Johane Allard, MD,FRCPC

johane.allard@uhn.on.ca 416-340-5159 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.