Home   |   Donate   |   Industry   |   Print Page   |   Contact Us   |   Your Cart   |   Sign In   |   Join Now
Keyword Search
Research: Join a Study
Share |

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.

 

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

Annual Report with outcome Profiles 1985-1992

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 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 (800) 776-OLEY.

 

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.


 

Updated 7/27/16

more Calendar

5/6/2017
Oley Regional Conference

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.
Membership Management Software Powered by YourMembership.com®  ::  Legal