Frequently Asked Questions
What is the PCROWD study?
How can I speak with someone if I need help enrolling? What if I have questions regarding the study?
Do I have to participate in this study?
Who is eligible to participate in the PCROWD study?
Do I have to be living in the United States to participate in the PCROWD study?
No. Eligible people are welcome to get registered to the study and submit their information. However, only people living in the United States can submit their samples for now.
Can I stop being in the research study?
You can stop your participation at any time. To do so, please write an email to firstname.lastname@example.org or send a letter to the study contact. Any samples you provided will not be discarded and will remain in the PCROWD tissue bank.
Will I be able to see the results of the study?
How do I send you my sample and will it cost me anything to do so?
What happens if I forget to take the sample collection kit with me on the day of the sample draw appointment?
How do I send you my medical records?
We will ask you or your medical provider to give us a copy of your medical records pertaining your precursor condition starting with diagnosis and continuing with the records of your regular follow up appointments.
These records can include any of the following:
Clinic visit notes
Other records related to your precursor condition
We will gather your records until you come ‘off study.’
You can also send us your records directly by emailing email@example.com
by sending via secure fax to 617-394-2603, or
by mail to:
450 Brookline Ave.
Boston, MA 02215
Specimens & Use
What types of research projects will researchers do with my specimens and health information?
Examples of the studies that may be done include, but are not limited to:
Studies that will help us understand how cancer forms within the body
Studies that will examine whether certain genes or DNA sequences protect or predispose people to developing cancer
Studies that will help with the development of new cancer drugs
Some of these studies may be published.
Who will use my samples and see my information?
Your specimens and health information will be available to researchers at the Dana-Farber/Harvard Cancer Center who have approval from the DFCI Institutional Review Board to use your samples and health information for research that is conducted under this Cancer Research Study. Your specimens may be shared with other places, such as the institutions that may conduct the sequencing. No information that could identify you will be sent with your specimens. In addition, if you agree, we will share your results with central data repositories (such as the National Institutes of Health), which may share information without your permission. Your name or other directly identifiable information would not be provided to these central repositories.
Test results will not be placed in your medical record.