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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.

Primary Caregivers: Participate in Research about Tube Feeding in Children with Special Health Care Needs


A research study investigating primary caregivers’ perceptions regarding gastrostomy buttons to provide tube feedings for children with special health care needs is being conducted. Parents and guardians of children (infant to 18 years of age) who have been diagnosed with dysphagia or who have had chronic feeding difficulties as a result of a developmental disability are being sought. To participate, caregivers should either have chosen a gastrostomy, declined a gastrostomy, or currently be considering a gastrostomy button for their children in response to their care team’s recommendation for placement. Participants will complete an online survey about their perceptions and experience regarding gastrostomy buttons and the decision-making process.


The survey will take approximately 15–20 minutes to complete. The survey is anonymous and data retrieved will be stored securely. In the case of publication of this study, confidentiality will be maintained. The survey is provided at no cost, and caregivers will receive no compensation for participation. Consent will be demonstrated by your voluntary completion of the online survey.


To take the online survey, please follow the link below: https://www.surveymonkey.com/r/M3KQS3G


If you have any questions about your participation in this project, please contact

Latoya Edwards, MPH, RD, CSP, LD, principal investigator, at LEdwards@atsu.edu.


Participate in the Development of a New Questionnaire Created to Serve the Home Parenteral Nutrition (HPN) Population

Volunteers Wanted for Research Study

This is a University of Rhode Island research study. The Principal Investigator is Dr. Geoffrey Greene; Co-Principal Investigator is Marion Winkler, PhD, RD, LDN. The purpose of this study is to assess the content validity of the Home Parenteral Nutrition Patient Reported Outcome Questionnaire (HPN-PRO-Q). This questionnaire is intended to be used in clinical practice by patients to self-assess factors that influence quality of life or adaptation to home parenteral nutrition (HPN). We intend to evaluate a questionnaire about HPN and quality of life that may be used in the future to start a conversation about your quality of life with your doctor or HPN management team.

You will be asked to participate in an interview via telephone so that we may assess your individual understanding and comprehension of the questions included on the HPN-PRO-Q. The interviewer will be located in be in a private office located at the University of Rhode Island, Kingston, Rhode Island (Fogerty Hall, office 103). The interview should take about one hour or longer, depending on how much you want to speak about each item on the questionnaire. Our conversation will be kept completely confidential and your responses will remain confidential.

There is no direct benefit to you. It is hoped that the information from the interview will lead to a better understanding of the relevance, comprehension, and appropriateness of each question in the HPN-PRO-Q.

This research has been approved by the University of Rhode Island Institutional Review Board (IRB).

To be eligible you must:
• Receive home parenteral nutrition;
• Be willing to speak about your experiences living with home parenteral nutrition;
• Be over 18 years old;
• Live in the United States;
• Have computer access, an active e-mail address, access to the Internet, and a telephone you can access while simultaneously using your computer;
• Be English speaking.

Confidentiality of all information will be maintained. This study will take place from October-November 2016.

For more information or to indicate your interest in participating in the study, e-mail Tracy Miller at hpnpatientoutcomes@etal.uri.edu. Please include your name, telephone number with area code, e-mail address, and best time to reach you.

Thank you for considering participation in this research study!

Pediatric Short Bowel Consumers on HPN Needed for Research Study

There is a study being conducted in children up to 17 years of age with short bowel syndrome (SBS) who are receiving parenteral nutrition for at least 30 percent of their nutritional or fluid needs.

Participants in this study will:

  • choose to either receive the study drug or take part as the standard of care group that will not receive study drug;
  • be enrolled in the study for at least 30 weeks, visit the study clinic 14 times, and have a telephone appointment each week they are not seen in the study clinic;
  • receive study-related medical care at no cost and reimbursement for travel costs may also be available.

If you are interested in learning more about this study opportunity, please visit www.shiretrials.com.

Hirschsprung Disease Genetics Study 

Dr. Aravinda Chakravarti’s laboratory at Johns Hopkins University has been investigating the genetics of Hirschsprung disease (HSCR) for more than twenty years. The purpose of our study is to continue the search for genes involved in Hirschsprung disease and to further characterize the known genes and the interactions between them. Our study will hopefully lead to a better understanding of the genetics of HSCR and, further down the road, improved diagnosis, treatment, and genetic counseling.


We ask study volunteers to complete a medical/family history questionnaire, provide access to some medical records, and to submit blood samples from the individual(s) affected with Hirschsprung disease and his/her parents (if available).


If you are interested, a kit containing all the materials necessary to participate can be sent to you. There will be no cost to you.


For more information please contact the study coordinator, Courtney Berrios, at (410) 502-7541 or hirschsprung@jhmi.edu. You can also visit the study website at aravindachakravartilab.org/pro/Hirschsprung_Study.html

Study of Hyperemesis Gravidarum 

Hyperemesis gravidarum is severe nausea and vomiting of pregnancy requiring IV hydration and/or nutritional support. This is a study to identify epidemiologic and genetic factors involved in hyperemesis gravidarum.


There is no cost to participants or travel needed to participate in this study. Participants will be asked to:sign a consent form;

  • answer a risk factor and outcomes survey;

  • submit a saliva sample for DNA analysis; and

  • identify an unaffected friend with at least 2 pregnancies that went beyond 27 weeks to participate in the study as a control.

If you have been diagnosed with hyperemesis gravidarum and you are interested in participating, please e-mail Dr. Marlena Fejzo at nvpstudy@usc.edu to determine eligibility. This study is run by Dr. Marlena S. Fejzo.

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 7/23/18

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6/21/2019 » 6/24/2019
2019 Oley/UI Health Combined Conference

6/22/2019 » 6/23/2019
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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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