Short bowel syndrome research

Calling PINNT members - patients and carers (someone who supports you)

Firslty, if you took part in this survey during February and March 2019 - sadly you cannot take part again.

Have you been diagnosed with Short Bowel Syndrome (SBS) and have home parenteral nutrition (HPN/TPN) or provide care (physical or mental support) ) for someone who has who is 18 years of age or older?

If yes, you may be able to participate in an online research study. The purpose of this study is to gain insight into the symptoms of SBS/IF and their impacts on patients and carers.

Patients must be aged 18 years and older and be on home parenteral nutrition (HPN/TPN). If you are a carer, you must be helping/supporting someone who is 18 years of age or older.

The survey will last approximately 30 minutes. There is no medical treatment being provided as part of this research study.

If you would like to be considered to take part in the study please do the following:

Email us on - we need the following information please:
  1. Your full name.
  2. PINNT membership number.
  3. State if you are the patient or a carer.

Exclusion criteria:
- A patient OR a carer of a patient currently taking any of these prescription medications for SBS: 
  Revestive® (teduglutide), Gattex® (teduglutide), Zorbtive® (somatropin).
- Carers who are home health nurses or professional caregivers are not eligible.

All expressions of interest will be logged and you will hear back from PINNT within 7 days. If you are selected, you will be put forward for a screening process. PINNT is not involved with any part of the survey once we pass on your details.

By replying to this announcement, and then sending an email with your expression of interest to take part, you give consent for your name and email address to be shared with the recruitment agency who will do the initial screening process.

If selected to participate and you quality after the screening process, you will be compensated for your time with £80 upon full and final completion of your participation.

Places are limited - if you would like to participate please respond as soon as possible.


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