What is My Healthy Maryland Precision Medicine Research?
My Healthy Maryland Precision Medicine Research is a long-term research study. It will create a diverse “biobank” of health data and samples that can be used for research to understand how genes and other factors affect health and disease. Results from this study will lead to better ways to individualize or “personalize” healthcare (called “Precision Health”) throughout Maryland and beyond.
What is the purpose of My Healthy Maryland Precision Medicine Research?
The purpose of My Healthy Maryland Precision Medicine Research is to gather health-related information (data) and samples from up to 250,000 Marylanders which researchers can use to learn more about health and disease. Discoveries with the data may lead to better prevention, diagnosis, and treatment of common and rare disease in patients throughout Maryland and beyond.
Why should I join?
By joining My Healthy Maryland Precision Medicine Research, you help advance medical research and the wellbeing of society. The research may lead to improved healthcare that brings new hope for people with different conditions or diseases, including ones that are common in your community. You may learn about your health, which could lead to a better quality of life for yourself and your family members.
Who can join?
To be in the study, you must meet three requirements:
- Be age 18 or older
- Currently live in Maryland.
- Be able to give consent for yourself in English.
Persons who are incarcerated cannot join the study at this time.
How can I sign up?
- It’s easy! The entire process can be done from your home or anywhere.
- You can join directly through MarylandPrecisionHealth.org or
- Download the My Healthy Maryland mobile app from the App Store or Play Store.
Who leads My Healthy Maryland Precision Medicine Research?
The University of Maryland School of Medicine (UMSOM) is committed to finding better ways to treat diseases and promote health through research. Dr. Stephen Davis, Chairman of the Department of Medicine is the study Lead Investigator.
What do I have to do if I join the study?
The entire study can be performed from your home or anywhere.
- Learn about the study and provide consent.
- Fill out surveys about your health, family history, and your lifestyle.
- Allow us to collect information from your electronic health record (EHR) at the places you receive your health care. You may also give us access directly through your EHR patient portal.
- Give a sample to store in the biobank that can be used for research. This can be done from your home with a simple cheek swab.
- Receive emails and text messages to update you about new activities on the My Healthy Maryland Precision Medicine Research app. You can say no to any activities or opt out of messaging at any time.
What kind of information am I being asked to share?
- You will fill out surveys about your health, family history and your lifestyle.
- We will collect health information from your medical records where you receive your health care. This may include your health problems, test results, medical procedures, images such as x-rays, and medicines you take.
How often will you contact me?
From time to time, we will send you emails or text messages.
- We may ask you to take part in brief multiple-choice surveys called Quick Polls. Answering the questions will allow you to see how your response compares to responses from other participants. This can be fun and what you learn may allow you to consider changing your lifestyle or do things to improve your health.
- We may provide health and wellness information for you and your family.
- We may contact you with additional research opportunities that you may be interested in.
- We may provide brief updates on the research we are doing as part of My Healthy Maryland Precision Medicine Research.
How often will you collect information from my electronic health record (EHR)?
How will you get my medical information if I do not have an EHR?
We will collect medical information about you through the surveys you complete. This information is very useful but is not as detailed as data from your EHR.
How do you get my research sample?
- Most people will be mailed a kit to collect cells from the inside of their cheeks (buccal swab). We will send instructions and a postage-paid return envelope.
- If you already have a sample in our biobank from another study, we may be able to use that sample.
- We may be able to get a sample of blood left over from a blood draw from your routine healthcare.
- We will let you know if we can get a sample that has already been collected.
What is DNA?
DNA is short for DeoxyriboNucleic Acid. DNA is inside our cells, and it supplies all information needed to make our bodies work.
What are genes?
Genes are pieces of DNA that have the instructions needed to make our bodies work which are passed from parents to their children. By studying genes, we can understand more about health and disease, such as your risk for disease and response to medication and how certain disease risk runs in families.
What kind of research will be done with my samples?
Your DNA samples will be used in research on health and disease. We may look at single genes or the sequence of all your genes. All human beings are 99.9 percent the same in their genetic makeup. Differences in the remaining 0.1 percent hold important clues about the causes of diseases. If you provide a blood sample, it may be used to study other markers of health and disease including proteins and other chemicals that are produced by your body.
Who can use my information and samples?
- The My Healthy Maryland Precision Medicine Research Team can use your samples and data for research.
- Other approved researchers from the University of Maryland and from outside of the University of Maryland can ask to use your data and samples. Each request will first be evaluated by the My Healthy Maryland Precision Medicine Research Advisory Committee. All research requests must further be approved by an Institutional Review Board (IRB). An IRB is a special committee that protects the rights and welfare of research participants. We will protect your privacy and secret information when we share your samples or data. Your name or other identifiers will NEVER be shared with anyone outside of the My Healthy Maryland Precision Medicine Research Team.
Will you research the disease that I have?
Researchers will use your samples for almost any disease or condition. Providing access to your EHR provides the best opportunity to study a broad range of diseases and conditions. From time to time, we will provide updates on the status of My Healthy Maryland Precision Medicine Research including the health conditions we are studying.
Will I be told when my sample is used for research?
You will not be told when research is done with your sample. However, from time to time we will provide updates on the overall research and findings from My Healthy Maryland Precision Medicine Research.
Will I receive results?
My Healthy Maryland Precision Medicine Research plans to return medically important results to participants if any become known. We will ask you to watch an educational video about receiving results and to provide informed consent. You can decide if you want to receive personal genetic results or not.
What kind of results can I expect?
- General results about everyone in the study participant will be shared on the participant portal. Participants can view their own responses and combined responses to surveys through the Participant Portal.
- We plan to return results relevant to health and disease to participants in the future. Examples include risk for certain genetic diseases and predicted response to medications. Researchers, doctors, and participants on our Advisory Board will decide what results to return. You can decide if you want to receive results or not.
When will I get results?
We cannot say at this time when results, whether group or individual, will be available. We will notify you if a result is available. If you choose to receive these medically important results, you will let us know by signing another consent form.
Will these results benefit my family member(s)?
Your family members may benefit if you learn important information about your health and decide to share it with them. There is no guarantee that you will receive direct benefit from your participation in this study.
Is this like 23andMe?
No. The purpose of My Healthy Maryland Precision Medicine Research is to use health-related information to learn more about health and diseases. While 23andMe does offer clients the choice to participate in research, its main purpose is to return personal genetic, health, and ancestry results.
Will you automatically put results in my medical record?
No, we will not put results in your medical record without your consent. The My Healthy Maryland Precision Medicine Research Team is still developing a plan for how to return individual genetic or other results.
If something happens to me, will you give results to my family member?
The My Healthy Maryland Precision Medicine Research plan for return of individual results involves a separate informed consent. It will ask for your preferences for receiving medically important results and for sharing with a family member.
Whom can I contact if I have more questions or would like more information?
Reach out to the My Healthy Maryland Precision Medicine Research Team for more information:
- Email at firstname.lastname@example.org
- Call (410) 706-6140
Will my health information be secure? How will you ensure my privacy?
To protect your confidentiality, we will:
- Collect and store your data in a secure cloud-computing environment and University of Maryland Baltimore databases that follow strict standards to protect individual privacy and data confidentiality.
- Label your stored sample and data with a code instead of your personal identifiers.
- Limit who is allowed to see information that directly identifies you.
- Not identify you by name in papers and scientific reports resulting from this research
- Obtain a Certificate of Confidentiality from the National Institutes of Health (NIH). This means that we cannot release or use information, documents, or samples that may identify you in any action or suit unless you say it is okay. This protection includes federal, state, or local proceedings. An example would be a court subpoena.
Who will have access to identifiable information collected about me?
- Members of the My Healthy Maryland Precision Medicine Research Team
- A limited number of employees of Vibrent Health, a commercial research company that maintains the My Healthy Maryland Precision Medicine Research online application will see your personal data to do their work.
- Upon request, representatives of the University of Maryland, the federal Office of Human Research Protections (OHRP), the Food and Drug Administration, the Department of Health and Human Services or other funding organizations may see your information to make sure the project is properly done.
What happens to my data and sample if I get seriously ill or if I die?
We will keep and use your samples and data for research forever, including after death, unless you withdraw from the study.
Will I be paid to join?
There is no payment to participants. If your sample or data is used by researchers to develop new tests, drugs, or other commercial products, you will not receive money for any such product.