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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?

 

Help AVA Understand Your Needs


The Association for Vascular Access (AVA) has asked the Oley Foundation to help spread the word about a ten-question survey they have developed regarding central venous access devices. The survey was developed to assist the VANGUARD initiative (Venous Access: National Guideline and Registry Development) with the following aims:

  • To understand some of the most critical issues faced by patients who need central venous access for medical therapies and their families and caregivers
  • To learn from patients, families, and caregivers about how they want to access health information;
  • To hear whether they are willing to provide information about venous access use and challenges that may not otherwise be included in their medical record;
  • To ask if they are willing to provide information that improves our understanding of the safety and effectiveness of venous access medical devices.

    The survey is intended for patients who depend upon a central venous access device (CVAD) for medical therapy currently—or who have depended upon a CVAD in the past—and their families and caregivers. In this survey, “central venous access devices” include all central lines, like PICCs, ports, tunneled central lines, hemodialysis and apheresis catheters.

    Answers to the survey are confidential. Participation is voluntary. Survey participants are not expected to benefit directly from the survey, and no compensation is offered for participation.

    Access the survey at www.surveymonkey.com/r/8KVS97P. Please participate, and share the survey link with others who might be interested in participating. Thank you!

    If you have any questions, contact Beth Gore, PhD (VANGUARD Patient Liaison) at bgore@avainfo.org.

     

Teen/Young Adult HPN (IV Nutrition) Consumers & Family Members Needed for Study

Researchers at the University of Kansas School of Nursing need to better understand what information, topics, and methods, such as hand held computers for connecting, will improve services to those with home parenteral nutrition (HPN). Those enrolled in the study will meet with research professionals and peer study participants using an iPad mini with a secure connection. One iPad mini will be loaned to each family to test connections to internet-based health education and activities for 8–12 months. Research is voluntary.

 

This study might be a good fit for you if you are: 13–30 years old and use HPN; 13 years or older and the family member of an HPN user 13–30; English speaking.

 

Researchers will start with teens 13–21 and their families, and when they obtain more iPads to loan out they will add young adults 22–30 and their families.

 

If you or your child take part in this study, you will: attend 1 or 2 face-to-face meetings from your home using a secure connection through an iPad mini webcam; and complete online surveys every 4 months for about one year. No individual’s surveys or opinions will be shared. Each study participant will receive $50 to thank them.

 

To take part, contact Cathy at Oley, (518) 262-5079 or harrinc@amc.edu; or complete contact form at https://redcap.kumc.edu/surveys/?s=XWJ9HWM48D.

 

The principal researcher for this study is nurse Carol E. Smith, RN, PhD, FAAN. Funded by the National Institutes of Health.

 


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 5/29/19

more Calendar

10/4/2019
Regional Conference - Las Vegas, Nevada (Industry)

10/4/2019
Regional Conference - Las Vegas, Nevada (Consumer/Caregiver/Clinician)

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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