I agree to participate in this research.
* must provide value
Yes
No
Is your area of medical practice within the United States?
* must provide value
Yes
No
In which state within the U.S. do you practice?
* must provide value
Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming
Have you read the International Data Notice below?
Mass general brigham
NOTICE TO Survey Participants REGARDING PERSONAL DATA PROCESSING ACTIVITIES
You are being provided with this Notice to Survey Participants Regarding Personal Data Processing Activities ("Notice") because investigators from Brigham and Women's Hospital, a member of Mass General Brigham Incorporated (collectively, "Institution"), have asked if you would like to participate in a survey-based research study entitled, "Survey on Ileal Pouch-Anal Anastomosis Surgery" ("Research"). In connection with the Research, your Personal Data (as defined below) may be Processed (as defined below) by (i) Institution; (ii) Institution's affiliates; (iii) Institution's research partners, contractors and vendors; and/or (iv) by other people or groups if required by law ("Third Parties"). This Notice is provided to you in furtherance of applicable data protection regulations, including but not limited to, the European Union data privacy regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 that went into effect 25 May 2018 ("GDPR"). This Notice provides details on how your Personal Data will be Processed and the rights you have with respect to your Personal Data.
Important Terms Used in this Notice
"Personal Data" means any and all information, including publicly available information, that relates to you as an identified or identifiable person and that is collected by Institution or is provided to Institution by you in relation to the Research. Your Personal Data may include, among other information, your name and initials, physical address, email address, phone number, professional experience (e.g., your curriculum vitae or resume), institutional affiliation and area of professional/clinical practice. Some of this Personal Data may be obtained from the internet or be available to the investigators through your mutual membership in professional organizations.
"Process" means any operation or set of operations that is performed on your Personal Data, whether or not by automated means, such as collection, recording, organization, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.
Purposes of Processing and Related Information
Institution and Third Parties may Process your Personal Data for purposes of the conduct and oversight of the Research, including preparation and implementation, administration, analysis, and data storage. This may include, for example and as applicable: (a) identification of potential participants in the Research; (b) assessment of your eligibility and agreement to participate in the Research and the status of survey completion; (c) providing information, instructions or support to you, or engaging in other communications with you; (d) query resolution or auditing of your work; (e) analysis of the results of the Research, (f) creation and maintenance of records of the Research; (g) publication of Research data and results; (h) facilitation of inspections by regulatory authorities and compliance with their requirements; (i) compliance with laws and regulations; and, (j) publicly disclosing your involvement in the Research on Institution's website and/or transparency websites, such as www.clinicaltrials.gov. You recognize that the Processing activities described in this form are necessary for Institution's legitimate interests.
Given that Institution is established in the U.S. and Third Parties may be established in the U.S. or other countries outside of the country in which you reside, your Personal Data will be transferred out of the country in which you reside to the U.S. and these other countries (if applicable) for Processing, where less strict privacy protections may apply to your Personal Data than those in the country in which you reside. Institution and these Third Parties will take appropriate measures to protect your Personal Data that is transferred outside the country in which you reside. By completing a survey, you consent to the transfer of your Personal Data outside of the country in which you reside for the purposes of the Research.
Institution will retain a copy of your Personal Data until completion of the purposes listed in this Notice or for as long as reasonably necessary to comply with applicable laws and Institution's internal retention policies. You acknowledge that the Processing activities described in this Notice are necessary for Institution's legitimate interests in relation to the Research and compliance with laws.
Your Rights
You have the right to request access to, correction of, or erasure of your Personal Data. You may also request restrictions on or object to certain Processing of your Personal Data, or request that your Personal Data be transferred to another person or entity. If you would like to make any such requests or would like more information about your rights related to your Personal Data, you can contact the Mass General Brigham Chief Information Security and Privacy Officer at cispo@partners.org. You can also contact Institution by mail at the following address: Mass General Brigham, Attn: Chief Information Security and Privacy Officer, 399 Revolution Drive, Somerville, MA 02145, United States. You understand and agree that Institution's ability to comply with any requests you make regarding the Processing of your Personal Data may be limited by the requirements of the Research and applicable laws and regulatory requirements to which Institution is subject. You also have a right to lodge a complaint with your country's supervisory authority.
* must provide value
What is the location of your medical practice (country)?
* must provide value
Afghanistan Albania Algeria Andorra Angola Antigua and Barbuda Argentina Armenia Australia Austria Azerbaijan The Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bhutan Bolivia Bosnia and Herzegovina Botswana Brazil Brunei Bulgaria Burkina Faso Burundi Cambodia Cameroon Canada Cape Verde Central African Republic Chad Chile China Colombia Comoros Democratic Republic of the Congo Costa Rica Cote d'Ivoire Croatia Cuba Cyprus Czech Republic Denmark Djibouti Dominica Dominican Republic East Timor (Timor-Leste) Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Fiji Finland France Gabon The Gambia Georgia Germany Ghana Greece Grenada Guatemala Guinea Guinea-Bissau Guyana Haiti Honduras Hungary Iceland India Indonesia Iran Iraq Ireland Israel Italy Jamaica Japan Jordan Kazakhstan Kenya Kiribati South Kosovo Kuwait Kyrgyzstan Laos Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macedonia Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Mauritania Mauritius Mexico Federated States of Moldova Monaco Mongolia Montenegro Morocco Mozambique Myanmar (Burma) Namibia Nauru Nepal Netherlands New Zealand Nicaragua Niger Nigeria Norway Oman Pakistan Palau Panama Papua New Guinea Paraguay Peru Philippines Poland Portugal Qatar Romania Russia Rwanda Saint Kitts and Nevis Saint Lucia Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Slovakia Slovenia Solomon Islands Somalia South Africa South Sudan Spain Sri Lanka Sudan Suriname Swaziland Sweden Switzerland Syria Taiwan Tajikistan Tanzania Thailand Togo Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Tuvalu Uganda Ukraine United Arab Emirates United Kingdom United States of America Uruguay Uzbekistan Vanuatu Vatican City (Holy See) Venezuela Vietnam Yemen Zambia Zimbabwe
What is your medical degree?
* must provide value
Physician
Nurse Practitioner
Physician Assistant
Midwife
Which of the following best describes your medical practice?
* must provide value
Academic Medicine Private Practice
What is your medical specialty?
* must provide value
Adult Gastroenterology Pediatric Gastroenterology Adult Colorectal Surgery Pediatric Colorectal Surgery Obstetrics and Gynecology
Are you board-certified in gastroenterology?
* must provide value
Yes
No
Are you board-certified in colorectal surgery?
* must provide value
Yes
No
Are you board-certified in maternal-fetal medicine?
* must provide value
Yes
No
What is your gender?
* must provide value
Female
Male
Prefer not to specify
What is your age?
(please enter numerical value)
* must provide value
How many years have you been in practice?
* must provide value
0-5 years
6-10 years
11-15 years
> 15 years
On average how many colectomies with end ileostomies (without j-pouch formation) do you perform annually?
* must provide value
0-5
5-10
11-15
16-20
> 20
N/A (I do not perform these procedures)
On average how many j-pouch procedures do you perform annually?
* must provide value
0-5
6-10
11-15
16-20
> 20
N/A (I do not perform these procedures)
Approximately how many patients with IBD (ulcerative colitis or Crohn's disease) do you care for annually?
* must provide value
< 10 patients
11-50 patients
51-100 patients
101-250 patients
> 250 patients
Approximately how many female patients with ulcerative colitis do you care for annually?
* must provide value
< 10 patients
10-30 patients
31-50 patients
> 50 patients
What percent of your female patients with ulcerative colitis are of reproductive age (16-45 years old)?
* must provide value
< 10% of patients
10-30% of patients
31-50% of patients
> 50% of patients
On average how many patients do you refer to colorectal surgery for a j-pouch procedure annually?
* must provide value
None (I do not refer any patients)
1-10 patients
11-20 patients
>20 patients
I don't know
Please answer the following questions to the best of your knowledge. Which of the following choices best describes the fertility of women with medically treated, quiescent ulcerative colitis compared to women without ulcerative colitis?
* must provide value
Decreased fertility
About the same fertility
Increased fertility
I don't know
Which of the following best describes the fertility of women with UC who have undergone a j-pouch (IPAA) procedure when compared to women with UC who have not had a j-pouch procedure?
* must provide value
Decreased fertility
About the same fertility
Increased fertility
I don't know
By how much does fertility decrease for women who have a j-pouch (IPAA) procedure?
* must provide value
0-10%
11-30%
31-50%
> 50%
I don't know
How does the fertility of female patients who have had a j-pouch procedure compare to the fertility of female patients who have undergone a rectal sparing colectomy and an end ileostomy (without j-pouch formation).
* must provide value
Decreased
About the same
Increased
I don't know
How does female fertility following a minimally invasive (laparoscopic or robotic) j-pouch procedure compare to female fertility following an open j-pouch procedure?
* must provide value
Decreased
About the same
Increased
I don't know
Do women with ulcerative colitis who have had a j-pouch procedure achieve live births following in vitro fertilization (IVF) at a rate that is decreased, the same or increased, when compared to women with ulcerative colitis who have not had j-pouch surgery?
* must provide value
Decreased
About the same
Increased
I don't know
Insufficient data
We are interested in learning about how providers approach discussions about IPAA procedures with the patients they care for. Please answer the following questions, indicating your level of agreement with each statement. How often do you bring up the topic of fertility with female patients of reproductive age during discussions about undergoing a j-pouch (IPAA) procedure?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
How often do you bring up the topic of fertility with female patients under the age of 16 when discussing options for a j-pouch (IPAA) procedure?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
N/A (I do not provide care for patients under the age of 16)
How often do you wait for patients to bring up the topic of fertility, when discussing a j-pouch (IPAA) procedure?
* must provide value
Always (I never initiate discussions about fertility with patients)
Almost always
Sometimes
Rarely
Never (I always initiate discussions about fertility with patients)
How often do you feel comfortable discussing the impact of j-pouch (IPAA) surgery on fertility with female patients?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
Which factors cause you to feel uncomfortable discussing the impact of j-pouch (IPAA) surgery on fertility? (Please check all that apply).
* must provide value
Which other factors cause you to feel uncomfortable discussing the impact of j-pouch (IPAA) surgery on fertility?
How often is preserving fertility as important as treating a patient's refractory ulcerative colitis?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
How often do you recommend that women of reproductive age with ulcerative colitis delay undergoing a j-pouch (IPAA) procedure to preserve fertility?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
How often do you recommend that women of reproductive age with refractory ulcerative colitis receive a diverting ostomy with a rectal stump left intact, in order to avoid pelvic dissection, and preserve fertility?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
For women who opt for a total colectomy with ileostomy and an intact rectal stump with a delayed j-pouch in order to preserve fertility, how long is it safe to wait prior to creating the j-pouch, so as not to affect sphincter function?
* must provide value
1 year
2 years
3 years
4 years
5 years
10 years
20 years
I don't know
If a female patient expresses concern about infertility following a j-pouch (IPAA) procedure, how often do you suggest the option of in vitro fertilization (IVF)?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
A 25-year-old patient with UC s/p proctocolectomy and j-pouch (IPAA) reconstruction is having difficulty conceiving. For how many months total would you advise her to continue unprotected intercourse in order to become pregnant, before seeking medical attention?
* must provide value
0-2 months
3-6 months
7-12 months
>12 months
I don't know
Your patient with UC and a history of a j-pouch (IPAA) procedure calls to inform you that she has a missed period by 5 weeks and has a positive pregnancy test. By what gestational age should she have her first prenatal visit for confirmation?
* must provide value
7-8 weeks
9-10 weeks
11-12 weeks
I don't know
How often do you recommend that pregnant women with a j-pouch consult with a maternal-fetal medicine specialist?
* must provide value
Always
Almost always
Sometimes
Rarely
Never
I don't know
Thank you for taking the time to participate in this study.