Question 1

What is the PCROWD study?

Accepted Answer

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.

Question 2

What is the purpose of this study?

Accepted Answer

The purpose of this study is to collect samples and clinical data from people who have been diagnosed with early phases of blood conditions that may develop into cancer. We call these precursor conditions.

Question 3

How can I speak with someone if I need help enrolling?

Accepted Answer

You can contact the study team via email at precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or by phone at 617-582-8664.(tel:617-582-8664)

Question 4

What is the PCROWD study?

Accepted Answer

The PCROWD study is a tissue and clinical data bank. It is part of the Center for Prevention of Progression of Blood Cancers (CPOP) (https://www.dana-farber.org/research/departments-centers-and-labs/departments-and-centers/center-for-prevention-of-progression-of-blood-cancers/)at Dana-Farber Cancer Institute.

Question 5

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

Accepted Answer

You can contact the study team via email at precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or by phone at 617-582-8664.(tel:617-582-8664)

Question 6

Do I have to participate in this study?

Accepted Answer

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.

Question 7

Who is eligible to participate in the PCROWD study?

Accepted Answer

People who have been diagnosed with a precursor condition are eligible to participate in this study. Visit the Home Page (https://www.enroll.pcrowd.org/)for more information.

Question 8

Do I have to be living in the United States to participate in the PCROWD study?

Accepted Answer

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.

Question 9

Can I stop being in the research study?

Accepted Answer

You can stop your participation at any time. To do so, please write an email to precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring about PCROWD)or send a letter to the study contact. Any samples you provided will not be discarded and will remain in the PCROWD tissue bank.

Question 10

Will I be able to see the results of the study?

Accepted Answer

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.

Question 11

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

Accepted Answer

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.

Question 12

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

Accepted Answer

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.

Question 13

How do I send you my medical records?

Accepted Answer

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(mailto:precursor@partners.org?subject=Inquiring About PCROWD)
 • by sending via secure fax to 617-394-2603, or
 • by mail to:

PCROWD Study 
450 Brookline Ave.
Boston, MA 02215

Question 14

Who is eligible to participate in the PCROWD study?

Accepted Answer

People who have been diagnosed with a precursor condition are eligible to participate in this study. Refer to the Home Page (https://www.enroll.pcrowd.org/)for more details.

Question 15

Do I have to be living in the United States to participate in the PCROWD study?

Accepted Answer

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.

Question 16

Can I join the study if I don’t have a computer or internet access?

Accepted Answer

Yes. You can contact the study team by calling 617-582-8664 (tel:617-582-8664)to request a paper copy of the study registration documents.

Question 17

Is having an email address required?

Accepted Answer

Having an email is required to get registered online. If you get registered online, you will also have access to the participant portal, where you can see your study registration information and update relevant data.
If you do not wish to get registered online, you also have the option to contact the study team by calling 617-582-8664.(tel:617-582-8664) and they will be happy to send you the paper forms to get registered to the study.

Question 18

What types of research projects will researchers do with my specimens and health information?

Accepted Answer

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.

Question 19

Who will use my samples and see my information?

Accepted Answer

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.

Question 20

How do I request a sample kit?

Accepted Answer

To request a kit, please log in to your PCROWD portal account and complete the "Collection Kit Request" form. Please ensure to request kits for appointments Monday through Thursday, as we cannot ship kits on Fridays or over the weekend. If you are having trouble completing this form, please reach out to the PCROWD Study team via email at precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or by phone at 617-582-8664.(tel:617-582-8664)

Question 21

What will you ask me to do?

Accepted Answer

We will ask you to share different types of information such as basic information about yourself, information about your diagnosis (including access to your medical health record), and information about your medical history, lifestyle, health habits, and family history. We will also ask you to provide samples at regular intervals. As part of your continued participation in the study, we may ask you to answer additional surveys.

Question 22

If I am already enrolled in another study, can I still join the PCROWD study?"

Accepted Answer

Yes. Participating in other studies, including clinical trial studies, does not exclude you from participating in the PCROWD study.

Question 23

Is the study open to international participants?

Accepted Answer

Yes. If you live outside of the United States, you are welcome to get registered to the PCROWD study. The information you provide at registration, including completing the study surveys, are important to our understanding of precursor conditions. You do not need to provide samples for now. We will notify you when this option is available to international participants.

Question 24

Does it cost anything to join?

Accepted Answer

Joining the PCROWD study is free. There are no costs to you or your insurance. Also, all sample packaging and shipping materials will be given to you to collect your sample. You will not need to pay for sending us your sample.

Question 25

Will I benefit from participating in this study?

Accepted Answer

This study will not benefit you directly. However, the information we learn from you and others who participate will help future patients with blood cancers and people who are at risk of developing those diseases.

Question 26

Will I be paid?

Accepted Answer

No. You will not be paid to participate in the PCROWD study. We may use your samples and information to develop a new product or medical test to be sold. The sponsor and hospital may benefit if this happens. You will not be paid if your samples are used for this purpose.

Question 27

Will the PCROWD study team communicate directly with my health care team?

Accepted Answer

With your authorization, we will contact your health care team to request copies of your medical health records related to your precursor condition. Alternatively, you can also send us your records directly to precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or by secure fax to 617-394-2603.

Question 28

How often will I hear from the study team?

Accepted Answer

We may contact you to ask you to complete additional study surveys. We may also contact you if we have questions regarding your registration or other information you have provided.
We will post study updates in the News section of the PCROWD study website. You are also welcome to contact the study team at any time.

Question 29

Will researchers contact me directly?

Accepted Answer

No. The PCROWD study staff will be the only ones contacting you about the study.

Question 30

Will my health information be shared with any insurance companies (health, life, disability, etc.)?"

Accepted Answer

No. We take your privacy very seriously and will take great care to protect it.

Question 31

Are there risks to me if I participate in this study?

Accepted Answer

The main risk of participating in this study is that your information or the information obtained from studying your samples, could be seen by unauthorized individuals. We have lowered this risk by setting strict controls on access to databases that store your information. There may be other privacy risks that we have not foreseen. While we believe the risks to you and your family are very low, we are unable to tell you exactly what all the risks are.

There are small risks related to drawing samples. You may experience slight pain and swelling at the site of the draw.

Question 32

Can I stop being on the research study?

Accepted Answer

You can stop your participation at any time. To do so, please write an email to precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or send a letter to the study contact. Any samples you provided will not be discarded and will remain in the PCROWD tissue bank.

Question 33

How long will my participation in the PCROWD study last and when would I come ‘off study’?

Accepted Answer

How long people participate in the PCROWD study will vary from one person to another. Participants in the PCROWD study will be followed until they progress to active blood cancer or until they decide to end their participation.

Many people with precursor conditions do not develop active disease. However, those who do progress from a precursor condition to active blood cancer requiring therapy would no longer be eligible to continue their participation in the study and would come ‘off study’. You may be contacted in the future about other research studies that might be relevant to you.

Participants who come ‘off study’ due to progression will be followed once a year. Participants who decide to end their participation will no longer be contacted by the PCROWD study team.

Question 34

What if I have questions regarding the study?

Accepted Answer

If you have any questions, email precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or call 617-582-8664.(tel:617-582-8664)

Question 35

What types of samples does the PCROWD study collect?

Accepted Answer

We ask that you send us a blood sample every time you get a sample drawn that has been ordered by your doctor to follow your precursor condition. If your doctor orders a bone marrow biopsy as part of your clinical care, we would also ask you give us a sample. This bone marrow sample and all blood samples should only be taken after the samples obtained for your care. We may also collect a saliva sample and would let you know if we need a sample from you.

Question 36

Why does the PCROWD study want my samples?

Accepted Answer

We are creating a sample bank with samples collected from people diagnosed with blood cancer precursor conditions. Your samples, and those of other participants, are a valuable resource that is available to researchers leading innovative experiments that will transform the future of people who have been diagnosed with these conditions and those have developed active blood cancer.

Question 37

How long will my samples be stored?

Accepted Answer

Your samples will be sent to a secure lab. There is no time limit for how long we will store your samples. If you stop your participation in the study, your samples will not be discarded.

Question 38

If I'm not comfortable giving a sample, can I still participate?"

Accepted Answer

Yes. You are welcome to participate and provide us with information regarding your diagnosis as well as information regarding your medical history, lifestyle, health habits, and family history.

Question 39

What kind of information could be found in this study and will I be able to see it?

Accepted Answer

This study is being done to add to our knowledge of how genes and other factors affect cancer. We are gathering this knowledge by studying groups of people, and the study is not meant to test your personal medical status. For that reason, 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.

Question 40

Who will use my samples and see my information?

Accepted Answer

Your samples and 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 study.

Your samples 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 samples. 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.

Question 41

Does my sample need to be sent on the same day it is drawn?

Accepted Answer

Yes. We must receive your sample within 24 hours after it was drawn so that it is viable for processing at the lab. Samples should be collected between Monday and Thursday and should be shipped to the study team on the same day they are drawn.

Question 42

How often do I need to send a blood sample?

Accepted Answer

How often we receive a sample from you will depend on how often your doctor is following you for your precursor condition. In general, we expect to receive a sample from you every 6 months. However, if you are only followed every 12 months, you can send us a sample every 12 months. Participants who have been diagnosed with smoldering multiple myeloma or smoldering Waldenstrӧm Macroglobulinemia who are followed every 3 months can send us a blood sample with that frequency.

Question 43

Do I have to send you a bone marrow sample to participate in this study?

Accepted Answer

No. We will only collect a bone marrow sample from you if you and your doctor agree that you should get a bone marrow biopsy as part of your clinical care. This sample should only be drawn after your clinical sample has been drawn. Please contact the study team two weeks prior to your bone marrow biopsy appointment to request a bone marrow collection kit.

Question 44

Where do I go to draw my sample?

Accepted Answer

Because your samples will be collected at the same time as the samples that are drawn to follow your precursor condition, research samples will be collected where you currently get your clinical samples drawn. For example, this can be at your doctor’s office or at the lab where you usually get your samples drawn.

Question 45

What is the process to get my sample drawn?

Accepted Answer

When you attend your blood draw appointment, ask the lab technician to draw a courtesy research sample after drawing your clinical sample. The research test tubes can be attached to the same needlestick point. Samples should be collected between Monday and Thursday and should be shipped to the study team on the same day they are drawn.

You will be provided with all the materials to package and ship your samples. Follow the packaging instructions to package your sample. 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.

Question 46

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

Accepted Answer

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.

Question 47

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

Accepted Answer

Check the expiry date on the test tubes. The expiry 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.

Question 48

What types of research projects will researchers do with my samples and health information?

Accepted Answer

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, and studies that will help with the development of new cancer drugs. Some of these studies may be published. You will not be identified in publications without your permission.

Question 49

Do I need to send you my medical records?

Accepted Answer

We need your medical records to properly annotate the history of your precursor condition. 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, and other records related to your precursor condition. We will gather your records until you come ‘off study’.

Question 50

How do I send you my medical records?

Accepted Answer

Although we ask for your authorization to contact your local medical providers to obtain your medical history pertaining your precursor condition, you can also send us your records directly to precursor@partners.org (mailto:precursor@partners.org?subject=Inquiring About PCROWD)or by secure fax to 617-394-2603, or by mail to PCROWD Study, 450 Brookline Ave., Boston, MA 02215.

Question 51

Can I send you my medical records directly instead of authorizing you to contact my medical providers?

Question 52

What will you do to protect my privacy?

Question 53

What will you do with my email address or phone number?

Question 54

Will you sell my email address or phone number?

Question 55

Who can see the information I give the PCROWD study?

Question 56

Will this study be involved in my ongoing medical care?

Question 57

Will I need to see a certain doctor for follow up care?

Question 58

What is involved for Healthcare Providers when patients join this study?

Question 59

Do you want healthcare providers to refer patients to this study?

FAQs