How will the VERDI Study help me or my family?
While we do not know if taking part in this study will directly benefit you, we are aiming to find ways to improve the accessibility of the VERDI model, which is becoming a common alternative to genetic counseling sessions, which can take more time, often have to be set up far in advance, and can be hard to reschedule in the event of timing conflicts or illness. The VERDI model aims to better serve a more diverse patient population at risk for inherited cancers by making information about genetic testing more easily available. In addition, we hope to offer better options for cancer prevention, early detection, and treatment.
As part of the study, and if you decide to have genetic testing, you will be asked how you prefer to get your results if any are found that may have meaning for your health and/or the health of your family. Overall study results can also be given to you once the study is completed and all results are in and reported. If you have any questions or concerns, please contact our team.
Is there any cost to me for participating?
You will not be charged for blood draws that occur as part of this research study. There may be some cost to you for the genetic testing, since this will be charged to your insurance.
If you have a positive genetic test, we will refer you to our genetic testing department for further analysis and information.
Will this study cover the costs of cancer screening?
Cancer screening tests (such as mammogram, colonoscopy, or whole-body MRI screening) may be recommended based on your genetic test result. Cancer screening costs are not covered by this study, and coverage for these services may depend on your insurance. Our study team can give you information about how to get screening. Please contact us for more information.
How will you protect my privacy and personal information?
A federal law, called HIPAA, protects your medical information. We take additional care to protect your personal information:
- Study data is in a database protected by a password and is within the “firewall” created by our institutions (Dana-Farber Cancer Institute and Cancer Institute of New Jersey (CINJ)/Rutgers).
- The database is on a secure server that only study staff can get to.
- Paper copies of the study data will be kept in locked file cabinets that only study staff can get to.
Can I leave the VERDI Study after I have joined?
Yes, participation is always optional. You can leave the study at any time. Please contact us if you want to leave the study so we can make sure to address any concerns you may have.
Who has access to my genetic data?
Our study team will have access to your genetic data, which will be stored in password-protected files online and in locked file cabinets. As stated in the consent form, some data must be put in government databases, but this data will not have any personal identifying information.
Do I need to submit my medical records as part of this study?
Having access to your medical records can help us determine your eligibility and potentially better understand your genetic test results. If we need copies of your medical records, study staff will be in touch to tell you how to send them.
How and when are samples taken for genetic testing?
If you decide to have genetic testing, your sample (either a saliva swab or blood draw) will be taken in the clinic when you get tested. If you have any questions or concerns, please contact our team.
How long will my samples from this study be stored?
Indefinitely; but, if at any point you decide to withdraw from the study, your data and samples that have not been sent to a database or biobank will be marked for withdrawal and will no longer be used.
If you decide to withdraw from this study, it may not be possible to remove all samples and data that have already been sent to a database or biobank. However, this information will be anonymized (all personal identifying information removed), and researchers will not be able to connect any results back to you.
Will I get results from this study?
If you decide to have genetic testing, the results of that test will be given to you. Overall study results can also be given to you once the study is completed and all results are in and reported. If you have any questions or concerns, please contact our team.
What resources are available to help me understand my genetic testing results?
We encourage you to speak with either your healthcare provider or one of the study staff at any of the study sites below, and they can direct you to helpful resources.
Cancer Institute of New Jersey (CINJ)/Rutgers
195 Little Albany St, Rm 1135
New Brunswick, NJ, 08901
Contact person: Brianna Jeffreys
bam219@cinj.rutgers.edu
Dana-Farber Cancer Institute – Longwood Medical Area
450 Brookline Avenue
Boston, MA 02215
617-632-4795
Contact person: Alison Slack
VERDIstudy@dfci.harvard.edu
Dana-Farber Cancer Institute – Merrimack Valley
5 Branch St.
Methuen, MA 01844
978-620-2020
Contact person: Maurice Brule
MauriceN_Brule@ dfci.harvard.edu
Dana-Farber Brigham Cancer Center – Foxborough
22 Patriot Pl
Foxborough, MA 02035
857-491-7187
Contact person: Nicole Houghton
nicole_houghton@dfci.harvard.edu
Dana-Farber Brigham Cancer Center at Milford Regional Medical Center
20 Prospect St
Milford, MA 01757
774-448-3720
Contact person: Michelle Kosinski
michelle_kosinski@dfci.harvard.edu
Dana-Farber/New Hampshire Oncology-Hematology
40 Buttrick Rd
Londonderry, NH 03053
Contact person: Lindsey Ginter
lindseyk_ginter@dfci.harvard.edu
Dana-Farber Brigham Cancer Center at South Shore Health
101 Columbian St
South Weymouth, MA 02190
781-624-4795
Contact person: Norah Fleming
norah_fleming@dfci.harvard.edu
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