FAQs  

Frequently Asked Questions

Enrollment Details

What is the PCROWD study?


The PCROWD study is a tissue and clinical data bank. It is part of the Center for Prevention of Progression of Blood Cancers (CPOP) at Dana-Farber Cancer Institute.




How can I speak with someone if I need help enrolling? What if I have questions regarding the study?


You can contact the study team via email at precursor@partners.org or by phone at 617-582-8664.




Do I have to participate in this study?


No. Taking part in this study is voluntary. Your care at DFCI or BWH will not be affected if you choose not to participate. Even if you decide to participate, you can change your mind and leave the study at any time. If you choose not to participate, or decide to participate and then later withdraw, you will not suffer any penalty or lose any benefits to which you are otherwise entitled.




Who is eligible to participate in the PCROWD study?


People who have been diagnosed with a precursor condition are eligible to participate in this study. See Who can join? for more information.




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 precursor@partners.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?


We will not give you the results of our research on your samples. However, we will post information on our website regarding key discoveries that we make about precursor conditions, overall results, and progress made through this research.




How do I send you my sample and will it cost me anything to do so?


To ship the sample, call FedEx to pick up the sample(s) at your house. You can also drop them off at the nearest FedEx office. Sending the sample will not cost you anything as the prepaid air bill is included with the collection kit.




What happens if I forget to take the sample collection kit with me on the day of the sample draw appointment?


Check the expiration date on the test tubes. The expiration date is identified by an hourglass icon and either located on a sticker pasted on the test tube or is printed in gray directly on the tube. If the tubes are set to expire before your next regular blood draw appointment, please request another collection kit through the participant portal or contact the study team two weeks prior to your appointment. Discard the expired test tubes and send the extra packaging and shipping materials together with your next sample.




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

  • Operative reports,

  • Discharge summaries,

  • Radiology/imaging,

  • Pathology reports,

  • Radiation reports,

  • Lab reports,

  • Photographs

  • 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 precursor@partners.org

  • by sending via secure fax to 617-394-2603, or

  • by mail to:

PCROWD Study

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.





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