Frequently Asked Questions
PIF-ECHO is a free, virtual education program and pilot research study designed for patients with chronic intestinal failure (CIF) and their caregivers.
PIF-ECHO uses a learning model from an existing public health initiative called Project ECHO (Extension for Community Healthcare Outcomes), which relies on case-based discussion to expand access to specialty knowledge. ECHO is normally geared towards physicians only. However, PIF-ECHO seeks to adapt the model to connect patients with a multidisciplinary team of experts. Through regularly scheduled, live, interactive Zoom sessions, patients and caregivers can:
- Learn with and from intestinal failure experts
- Share lived experience and foster community
- Build practical knowledge and confidence to better navigate CIF
This study is led by physicians and researchers at Mount Sinai Hospital, in collaboration with national patient advocacy organizations.
People with CIF often have limited access to specialized expert care and may live far from intestinal rehabilitation programs. As a result, many people end up managing highly complex medical care largely on their own, which can place a significant burden on patients and caregivers.
PIF-ECHO will study whether direct-to-patient education can:
- Improve confidence and preparedness for managing home parenteral nutrition (HPN)
- Increase understanding of complications and prevention
- Improve patient-reported quality of life
- Reduce isolation by learning alongside others with similar experiences
You may be eligible if you (or someone you care for, has):
- Have chronic intestinal failure
- Have been on home parenteral nutrition (HPN) and/or intravenous fluids for at least 6 months
- Do not have active cancer or HIV
- Are age 18 or older
- Can participate in Zoom sessions from home or other convenient location
Participation is voluntary, and you may stop at any time.
Participants are asked to:
- Complete online surveys about their experiences and quality of life
- Attend an introductory session
- Attend as many additional sessions (out of 12 offered, one per week)
- Join live Zoom sessions (60–90 minutes each)
Session topics include:
- Nutrition and diet
- Medical management of CIF
- Central line care
- Preventing and managing PN complications
Participants may also choose to complete an optional one-time online survey about preferences for CIF care (25–30 minutes).
Yes. This is a minimal-risk study.
- All sessions are password-protected on Zoom
- Participation does not replace medical care but only provide education from experts
- Data are stored securely and de-identified
- You control how much you share
Participants receive modest gift-card compensation for completing surveys.
The Principal Investigator of the study is Dr. Kishore Iyer of Mount Sinai Hospital in New York City. The study team also includes physicians, dietitians, researchers, and patient advocates. PIF-ECHO is supported by national organizations and patient advocates including:
- Oley Foundation
- Short Bowel Syndrome Foundation
- Intestinal Rehab & Transplant Unwrapped
- Gutsy Perspective
- Global Gastroschisis Foundation
- Intestinal Malrotation Foundation
If you are interested or want more information, you can reach out directly to the study team by emailing info@liftecho.org or Dr Iyer directly at: kishore.iyer@mountsinai.org
Please note you are NOT committing by asking questions. Full study details will be shared with you before consent.
