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Ongoing Research Trials

All of the research studies listed have been deemed appropriate for HomePEN consumers/caregivers by the Oley Research Committee; however, the Oley Foundation strongly encourages anyone considering participating in medical research to discuss the issue with their managing physician before signing up. We also encourage you to read the articles below to learn more about research trials.

 

Market Research vs. Clinical Research: Opportunities Available through Oley

Why Are Clinical Trials Important?

 

Mayo Clinic Home Enteral Nutrition Survey

   


Survey of Home Enteral Nutrition (Tube Feeding or HEN)

Manpreet S. Mundi, MD, and a team of researchers at Mayo Clinic in Rochester, Minnesota, are inviting everyone involved with home enteral nutrition (tube feeding) to participate in an international survey. The results will help them better understand the broad range of practices used by those on home tube feeding, their caregivers, and the healthcare professionals who place and care for these tubes. 

 

With data showing that tube feeding is helpful in many circumstances, its use, especially at home, continues to increase. Yet the practices of people who are tube feeding at home, their caregivers, and their healthcare providers are different, and depend largely on local factors such as the healthcare providers’ experience with feeding tubes, what level and types of care and supplies are available, and what a patient’s insurance will cover. As an example, the types and size of tubes used often depends on what the healthcare provider who is placing the tube is familiar with or has available to them. Similarly, the formulas used can vary according to what a provider is comfortable prescribing, whether insurance coverage is available, and what the patient prefers.   

 

This diversity can prove challenging as broad changes to the practice of tube feeding are put in place, such as implementation of ENFit®. ENFit refers to a specific type of feeding tube connector that has been designed to connect only to other ENFit tube feeding products. It was designed to make it harder for someone to mistakenly connect something meant for tube feeding to a tube meant for something else (for example, to prevent a syringe containing medication prepared for a g-tube being connected to an IV line). Tubing misconnections can lead to significant morbidity and mortality. However, the diversity in tube feeding practices raises issues regarding the ability of ENFit to meet the needs of all tube feeding consumers. 

 

With these challenges in mind, Mayo has designed a survey to try and assess the broad range of practices among consumers, caregivers, and healthcare professionals. The goal is to collect data regarding everyone’s tube feeding experience, including diagnosis, complications, and types of formulas used, as well as experience with ENFit and during the COVID-19 pandemic. 

 

The researchers thank you in advance for your participation. Your answers will help them continue to improve the care people on home tube feeding receive. 

 

To take the survey, please visit: https://redcap3.mayo.edu/redcap/surveys/?s=TFFMHWL9LJ

 

Note that no personal data will be collected and all responses will be presented as part of a total of all responses, not individually.

 

posted: 9/30/20


In the Greater Vancouver Area?

Adult home tube feed users are not tracked within Fraser Health Authority (Greater Vancouver Area, BC, Canada). Rebekah Sandhu, a clinical dietitian at Fraser Health Authority, is leading a research project to learn about the experiences and challenges of adults living in this area with a home tube feed and their caregivers. This information will be used to improve healthcare services 

 

What is required?
One in-person interview (60 minutes) at a location of your choice (your home or local hospital). 

 

Who Can Participate?
People who use, or caregivers for people who use, tube feeds for nutrition or have in the past, and who live at home.

Contact Rebekah Sandhu, rebekah.sandhu@fraserhealth.ca or (604) 520-6000, ext. 745319.

 

posted: 1/31/20



 

More Information

More information on these studies may be available by calling (518) 262-5079.

 

If you are interested in having your study listed, complete this form (Research Form), OR fax the same information to (518) 262-5528. If you have questions, contact Joan Bishop or call (518) 262-5079.

 

Oley Foundation - North American Home Parenteral & Enteral Nutrition Patient Registry 

Annual Report with outcome Profiles 1985-1992


Updated 9/30/20

more Calendar

11/14/2020
Oley Foundation Mini Meeting (Consumer/Caregiver/Clinician)

11/14/2020
Oley Foundation Virtual Mini Meeting (Industry)

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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