Information Statement
What research is being done?
This research is a survey that explores patient preferences, trade-offs, and key factors that influence patient/family decisions about different types of care delivery for Chronic Intestinal Failure (CIF).
Why is this research being done?
Understanding the care delivery preferences of patients with CIF is important for shaping systems that truly reflect their needs. CIF is a complex condition that often requires long-term management and frequent interaction with specialized care teams. By learning what patients value, whether it's minimizing travel, having access to specialized support, or receiving care in more flexible settings, we can better understand how to improve the delivery of CIF healthcare to support quality of life and long-term outcomes. This research can help improve CIF healthcare to be more patient-centric.
Who can participate in the research?
You are invited to participate if you are an adult individual (≥18 years old) who is currently living with chronic intestinal failure (CIF) or a caregiver of an adult patient in the United States. We are defining chronic intestinal failure (CIF) as the need for parenteral nutrition (PN) used consistently for at least 6 months.
What do you need to do to participate?
Please read this Information Statement in its entirety and be sure you understand its contents before you consent to participate. If you do not understand or have questions about anything, please contact the researchers.
If you would like to participate, please complete the online survey below. The survey should take approximately 25 minutes. You can withdraw at any time, but any responses you have already submitted will be retained for analysis purposes
As a thank you for completing the survey, you may choose to enter a cash prize draw at the end of the questionnaire. Entry is optional and requires providing an email address. We plan one draw for a cash prize each week until study completion.
Completion and submission of the online questionnaire will be considered as implied consent to participate.
If you would like further information, please contact:
kishore.iyer@mountsinai.org (Kishore Iyer, Principal Investigator, Tel: 212-659-9300)
marjorie.nisenholtz@mountsinai.org (Marjorie Nisenholtz, Study Coordinator)
