Your questions, answered
You can join the study by navigating to the study registration page. You may also contact the study team at LSRegistry@dfci.harvard.edu or 1-617-632-4830.
The Lynch Syndrome Registry is the first of its kind to collect samples specifically from patients with Lynch syndrome. Participating in the registry would help build the amount of information and biological samples accessible to researchers to learn more about Lynch syndrome and Lynch syndrome-associated cancers.
You are 18 years or older AND one of the following:
- You have a positive genetic mutation for Lynch syndrome
- You have a cancer with mismatch repair deficiency or microsatellite instability AND a variant of uncertain significance in a Lynch syndrome gene with a family history suggestive of Lynch syndrome
- You have been determined to be an obligate carrier for Lynch syndrome
The Dana-Farber Cancer Institute Lynch Syndrome Registry is enrolling patients with known or suspected Lynch syndrome in a research study that collects clinical information and samples to help researchers learn more about Lynch syndrome with the goal of developing strategies that can improve prevention, early detection and treatment of cancer.
You will be assigned a unique study ID number, which is not the same as your hospital record number or social security number. Your biological specimens would also be assigned a unique code. Any material that we share with others will be supplied with the code numbers only, and without your name, hospital record number, or social security number. All study information will be stored in locked file cabinets and in password-protected computer files. Only authorized study personnel will have access to these files.
Follow this link to reset your password.
Absolutely! Any friends or family members with known or suspected Lynch syndrome may be eligible to participate. If you would like to refer a friend or family member to this study, please have them contact the study team at LSRegistry@dfci.harvard.edu or 1-617-632-4830.
You will be in the research study for an indefinite amount of time but, active participation will be limited to an annual questionnaire completion and sample collections in some individuals.
You will not be paid for participating in this 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. There are no plans to pay you if your samples are used for this purpose.
Taking part in this research study may or may not benefit you. We hope the information learned from this research study will provide more information about development of cancer and pre-cancerous lesions in individuals with Lynch syndrome. This may lead to improvements in early detection and prevention in the future.
You will be in the research study for an indefinite amount of time but, active participation will be limited to an annual questionnaire completion and sample collections in some individuals.
There is no planned end date for this research study. Collection of information and specimens for the registry is considered to be ongoing.
In research, there is power in numbers. The more participants that join a particular research study, the stronger the results will be when researchers analyze data collected from the study.
No, the Lynch Syndrome Registry does not cover the cost of cancer surveillance ordered by your provider. However, you do not have to pay for the biological samples that will be collected from you as a participant in the study.
Tests done on samples in this research study are only for research and have no clear meaning for your health care. For this reason, your study doctor will not share the results with you.
You will be asked to provide information about your medical history, diet and lifestyle information and personal and family history of cancer. Additional contact by phone or email may be necessary during the course of the study to maintain your comprehensive medical information in the registry.
You can also choose to stop participating in the research study at any time. Contact the study team by phone or email if you are thinking about stopping or decide to stop. Leaving the research study will not affect your medical care outside of the research study. If you choose not to participate, are not eligible to participate, or withdraw from this research study, this will not affect your present or future care and will not cause any penalty or loss of benefits to which you are otherwise entitled. If you decide to withdraw from the study, it will not be possible to remove the samples and/or data that have already been submitted to the registry.
The main sponsor for this study is the Dana-Farber Cancer Institute. Other sponsors include Janssen Biotech Inc.
Your personal information and/or biospecimens collected during this study may be stored and used for future research. Any personal identifiers will be removed, before they are shared, so that the information or samples cannot be linked back to you. As a result, we will no longer be able to identify and destroy them. Investigators, including investigators from collaborating institutions, can request this data and samples for new research. Samples and data may also be shared with outside non-profit academic investigators as well as with for-profit pharmaceutical investigators or commercial entities, with whom we collaborate. You will not be asked to provide additional informed consent for the use of your de-identified information or samples in future research. Future research studies may include genetic research. Your genes are unique to you. At this time, you cannot be identified through this research, if the samples and specimens are de-identified. There is a risk that you might be reidentified in the future as genetic research progresses.
If you have additional questions, please do not hesitate to reach out to the study team at LSRegistry@dfci.harvard.edu or 1-617-632-4830.
There are small risks associated with obtaining a blood specimen. You may experience slight pain and swelling at the site of the blood draw. These complications are rare and should resolve within a few days. If they do not, you should contact your local doctor.
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