TBRS Biorepository Donor Survey

TBRS Biorepository Donor Survey

Thank you for donating to the TBRS Community Biorepository! Please complete this short survey so we can coordinate your sample collection.
Your Name *

First NameLast Name
Address

Street Address

Street Address Line 2

CityState / Province

Postal / Zip CodeCountry
Email*
example@example.com
Phone Number
Are you the individual who is diagnosed with TBRS?*

Yes, I am the diagnosed individual.No, my loved one is the diagnosed individual.
Name of diagnosed individual

First NameLast Name
Please provide the variant information from the genetic report (email kit@tbrsyndrome.org for help if needed)
The genetic report states this variant is

PathogenicLikely pathogenicVariant of unknown significanceLikely benignBenignI'm not sure
Date of birth of diagnosed individual

MonthDayYear
Date
Are you interested in participating in the Drug Discovery and Repurposing project? (this will require a nasal swab)

yesno
NOTE: If you are interested in participating in the Drug Discovery and Repurposing project, you MUST select an option including a nasal swab. Other sample types may be collected at the same time, but are not required.
What type of sample(s) are you willing to donate?

Nasal swab onlyBlood sample onlyNasal swab and blood sampleOther
Where would you prefer to do the sample collection?

Quest DiagnosticsDoctor or physician's office (Please confirm that they are willing to do a "courtesy draw" before selecting this option.)Mobile Phlebotomist (will drive to meet you at your home or desired location)I live outside of the U.S. and will coordinate the donation with a clinical blood draw (this is our only option for those who live outside of the U.S.)Other
If "other", please explain:
Has the diagnosed individual ever been diagnosed with cancer?

YesNo
Please provide any details that you are comfortable with.
Has the diagnosed individual ever received a bone marrow transplant?*

YesNo
Please provide any details that you are comfortable with.
Does the diagnosed individual have any upcoming surgeries or procedures?

YesNo
The TBRS Biorepository also accepts tissue samples (skin, tumor tissue, spinal fluid, etc). These sample collections can be coordinated during medical procedures like surgeries and biopsies. Please provide details if you are interested in learning more.
Does the diagnosed individual have any siblings?

YesNo
Would the sibling (or one of the siblings) be willing to donate a sample as well?

YesNo
What is the legal name of the sibling that will be donating?
First and last name
Have you participated in the TBRS Community Patient Registry?

YesNo
Do you intend to participate in the TBRS Community Patient Registry in the future?

YesNo
To donate to the Biorepository, we require that participants create and provide their CRID.

A CRID, or Clinical Research ID, is a unique and universal ID number for patients.
This ID provides patients with a unique ID that:
- Is used to identify samples and data in a way that is de-identified, and
- Can be used to link available clinical data to your biological samples
Creating a CRID does not require personal health information and can be provided to other studies that patients are a part of!

You can create a CRID at https://thecrid.org/

If you would like assistance, or have any questions, please email kit@tbrsyndrome.org

Thank you for your participation!
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