Ongoing Research Trials
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.
Oley Foundation - North American Home Parenteral & Enteral Nutrition Patient Registry
Annual Report with outcome Profiles 1985-1992
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 firstname.lastname@example.org. 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!
Mayo Clinic is currently conducting a survey on the use of tube feeding at home
You are being asked to participate in the study because you use tube feeding at home.
If you agree to participate, you or your caregiver will be asked to complete a brief online survey. Participation is voluntary and you will not receive payment. To take the online survey, go to https://redcap2.mayo.edu/redcap/surveys/?s=5ZXMEv.
To make the survey available to people who are not able to complete the survey online, the Oley Foundation has set up a toll-free line that will be monitored by a volunteer. Please call (866) 454-7309 to request a paper copy of the survey or to take the survey by phone.
There are no known risks to you from taking part in this research study as it is only an online survey. This study will not make your health better. It is for the benefit of research.
Please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty. Specifically, your current or future medical care will not be jeopardized if you choose not to participate.
If you have any questions about this research study you can contact Ryan Hurt at (507) 284-4461. If you have any concerns, complaints, or general questions about research or your rights as a participant, please contact the Mayo Institutional Review Board (IRB) to speak to someone independent of the research team at (507) 266-4000 or toll free at (866) 273-4681.
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 email@example.com. You can also visit the study website at
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
There is no cost to participants or
travel needed to participate in this study. Participants will be asked to:sign a consent form;
If you have been diagnosed with
hyperemesis gravidarum and you are interested in participating, please e-mail
Dr. Marlena Fejzo at firstname.lastname@example.org to
determine eligibility. This study
is run by Dr. Marlena S. Fejzo.
answer a risk factor and outcomes
submit a saliva sample for DNA
identify an unaffected friend with at
least 2 pregnancies that went beyond 27 weeks to participate in the study as a
More information on these studies may be available by calling (800)
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 (800) 776-6539.