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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.
Oley Foundation - North American Home Parenteral & Enteral Nutrition Patient Registry
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.
The principal researcher for this study is nurse Carol E. Smith, RN, PhD, FAAN. Funded by the National Institutes of Health.
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.
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.
If you are interested in learning more about this study opportunity, please visit www.shiretrials.com.
Hirschsprung Disease Genetics StudyDr. 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 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;
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.
More InformationMore 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.
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