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PROPS (Patient Reported Outcomes After Pouch Surgery) Study: Looking for Volunteers!

Returning?

A A A

Thank you for your interest in our study!

We are developing a standardized patient questionnaire that will help clinicians understand how J-pouch surgery has affected the everyday lives of patients. We are asking people who have had J-pouch surgery for inflammatory bowel disease (ulcerative colitis or Crohn’s disease) to take part in this study. Any patient with inflammatory bowel disease (ulcerative colitis, intermediate colitis, or Crohn’s disease) who has had an ileal pouch-anal anastomosis (IPAA) procedure to form an internal ileal pouch (e.g. J-pouch, S-pouch, W-pouch) and has had their ileostomy reversed more than 3 months ago. It does not matter if you had complications after your surgery, however you are not eligible for this study if your pouch has been removed. Additionally, if you have a Koch pouch (continent ileostomy) you are not eligible for this study. We aim to include at least 200 patients from across the country.

What will be involved?

If you choose to participate, you will be asked to complete one web-based questionnaire, and possibly a second one a few weeks later. Each of these questionnaires should take roughly 20 minutes to complete and will ask you about various aspects related to your pouch function and quality of life. All of your answers will be stored securely with password protection. Please note, if you live outside of the United States you will not receive a second questionnaire.

How do I register?

If you would like to participate in this study, please fill out the opt-in form below. You will then be taken to a short survey about your history of IBD and pouch surgery.

Please note that your participation is completely voluntary, and if you decide to participate you may withdraw at any time. Your decision of whether to participate in this study will not affect your medical care now or in the future.

If you have previously participated in the PROPS Delphi Study, you are welcome to participate in this next phase of the PROPS Study.

Do you wish to participate in this study?

Yes

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Do you live in the United States?

Yes

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Email address

Re-enter Email address

How did you learn about the study?

Crohn's & Colitis Foundation research study email

Crohn's & Colitis Foundation webpage

Facebook

Twitter

J-pouch.org

PROPS Delphi Study email

Your hospital

Other

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If other, please list:

Please select your hospital:

If other hospital, please name:

Have you previously participated in the PROPS Delphi Study?

Yes

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Who is undertaking the study?

The study team is being led by Dr. Liliana Bordeianou from Massachusetts General Hospital and Harvard Medical School and Dr. Madhulika Varma from UCSF, and includes a diverse international team of patient advocates, surgeons, gastroenterologists, and nurses. The study is being supported by professional organizations including the Crohn’s & Colitis Foundation and the American Society of Colon & Rectal Surgeons.

Your privacy is important to us

Your email will only be used to send you the surveys and to send you information about the study. Future emails with links to the surveys will not include any information regarding the study in order to comply with research policy. Please be on the lookout for emails with “PROPS Study” in the subject line. All information will be stored on password-protected computers to protect your confidentiality. Please note, if you live outside of the United States, your answers will be treated anonymously and in confidence, and therefore we will not be collecting your email address.

Contact

If you have any questions, please reach out to Derek Schneider, Study Coordinator, by emailing dschneider3@mgh.harvard.edu.

If you’d like to speak to someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Partners Human Research Committee at 857-282-1900.

Please note: We are required by the Health Insurance Portability and Accountability Act (HIPAA) to protect the privacy of health information obtained for research. This is an abbreviated notice, and does not describe all details of this requirement. During this study, identifiable information about you or your health will be collected and shared with the researchers conducting the research. In general, under federal law, identifiable health information is private. However, there are exceptions to this rule. In some cases, others may see your identifiable health information for purposes of research oversight, quality control, public health and safety, or law enforcement. We share your health information only when we must, and we ask anyone who receives it from us to protect your privacy. *Partners HealthCare Notice for Use and Sharing of Protected Health Information http://www.partners.org/Assets/Documents/Notices/Partners_Privacy_Policy_English.pdf

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