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YOUR HELP TODAY CAN IMPROVE HEALTHCARE TOMORROW.

Participate in the Clemson University Precision Medicine Study.


ABOUT PRECISION MEDICINE


WHAT IS PRECISION MEDICINE?

Precision medicine is new approach to disease prevention and treatment that
considers differences in people’s genes, environments, and lifestyles. This
approach aims to target the right treatments to the right patients at the right
time.


ABOUT CLEMSON UNIVERSITY’S PRECISION MEDICINE INITIATIVE

RESEARCH

The Clemson University Precision Medicine Initiative (CUPMI) is a health
research study in South Carolina funded by Clemson University.  The study is
based at the Center for Human Genetics, a state-of-the-art research and
educational facility located in Greenwood, South Carolina. 
(https://scienceweb.clemson.edu/chg/). Researchers in the Center seek to gain
insights in genetic, lifestyle, and environmental risk factors for human
diseases.

VOLUNTEERS

We hope that 200 people will join this initial study to help us improve the
process for a longer-term study of 200,000 South Carolinians or more. If you
agree to volunteer for this study, your health and genetic information will be
collected and combined with that of other participants.

DISCOVERIES

In the long-term, if the study expands, researchers will be able to use the data
from this study in future studies. They will look for patterns to learn more
about what affects people’s health, leading them to discoveries or solutions
that prevent diseases, such as cancer, heart disease, and diabetes, and improve
the health of individuals and families. You will be helping researchers make
discoveries that may help future generations live happier and healthier lives.

Clemson is proud to partner with Rymedi and Self Regional Healthcare in the
initial CUPMI Phase 1 pilot study estimated to enroll 200 participants. The
study is led by Dr. Trudy Mackay PhD, FRS, Director of the Clemson University
Center for Human Genetics.





READY TO LEARN MORE?


Join Now


TAKING PART


JOIN THE CUPMI STUDY

By taking part in this study, you can help improve healthcare for South
Carolinians. You may select to receive ancestry related results about you and
general news and updates on the study results and next steps.


WHO CAN TAKE PART?

You can take part in the study if you are:

 * Adult, over the age of 18. This includes individuals and families (parents
   and any adult relative and adult children).
 * Employee or patient of Self Regional Healthcare (SRH) with access to the SRH
   electronic health record system (MyChart).


FIND OUT MORE

1. Learn: You can learn more about what is involved in participating in the
study by reviewing the frequently asked questions (FAQs) and the informed
consent form.

 * Consent form

You may read this form before joining the study. If you decide to join, you can
sign it electronically during your appointment to enroll. No need to sign and
return before your appointment.


WHAT HAPPENS WHEN YOU JOIN?



 2. Join: book an appointment online to enroll.
 3. Enroll (15-25mins): sign informed consent form, complete study registration,
    and book an in-person appointment to provide a saliva sample.
 4. Respond (15-30mins): complete online surveys.
 5. Provide (5 mins): sign EHR/HIPAA form (optional) and provide a small saliva
    sample (in-person).

 

You will receive a one-time $25 gift card for providing a saliva sample and
completing the surveys. You may select to receive a free copy of your genetic
ancestry report.

 

Individuals: can perform steps 1-4 online.

Families (more than 3 adults): can select an at-home visit to complete steps 3-5


ARE YOU READY TO TAKE PART IN THE STUDY?


Join Now


FREQUENTLY ASKED QUESTIONS (FAQS)


What information will you ask me for?

If you decide to join CUPMI, we will collect relevant data such as lifestyle,
health, and genetic information about you. We will gather some information from
you directly when you register for the study, through study surveys, and some
data from elsewhere. Data we will gather about you:

 * Basic data. We will ask you for data like your name, date of birth, phone
   number, and email: This information will be requested as part of setting up a
   CUPMI Participant Portal account managed by Rymedi, a technology partner
   working with Clemson University on this study. When creating the Participant
   Portal account, you will be asked to consent to Rymedi’s Terms and
   Conditions.
 * Health data. We will ask you questions about your health, family, and
   lifestyle through surveys. This will take about 15-30 minutes. You do not
   have to answer any question you do not want to answer.
 * Saliva sample. We will ask you to give a saliva sample. We will collect 2 ml
   of saliva (less than one half teaspoon) by having you “spit” in a tube. The
   location of where your sample is collected will be recorded. The location
   information is only stored on Rymedi’s platform and will not be shared with
   researchers analyzing the samples.
 * Electronic health record (EHR). We will ask permission to get information
   from your electronic health record; you can decide yes or no. You can say no
   and still take part in the study.
   
   There will be a Health Insurance Portability and Accountability Act (HIPAA)
   authorization form for you to sign if you decide to give us permission to
   request this information from your EHR. The HIPAA authorization form includes
   the type of information that will be shared from your EHR.

 * Other data. We will add data from other sources to the information you give
   us (for example, environmental data). This will give researchers more data
   about factors that might affect your health. We will add other publicly
   available data about your area based on the nature of your work (for example,
   office or manual labor) and the school district and county you live in. For
   example, we may add data about the number of people in the area where you
   live, pollution data, and distance to the nearest grocery store or park.

What are genes and DNA?

This research includes data about your genes. Genes are made of DNA
(deoxyribonucleic acid), which contains the instructions for your body’s
development and function. This DNA information determines traits that are passed
on from parent to child, such as eye and hair color and the risk/chance you will
get certain diseases.

We all share more than 99.9% of our DNA with each other. The other 0.1% is what
makes us different. DNA can tell us the genetics that makes us unique. Things
like our hair color and eye color depend on the bits of our DNA that are
different between human beings. We know what some DNA differences mean, but we
still have a lot to learn. For example, we are still learning what role DNA
plays in most health conditions. But for a small number of things, we already
know a lot about the role DNA plays.

We know that certain differences in our DNA can affect our health. For example,
certain differences in our DNA can:

 * Increase our risk for some health conditions. This could include some cancers
   and types of heart disease.
 * Increase the risk of passing specific health conditions on to our children,
   even if we don’t have those conditions.
 * Impact how specific medicines work.

We also know that other differences in our DNA can tell us about things like:

 * Where our ancestors may be from.
 * How our bodies work.

The more we study our DNA, the more we will learn what DNA differences mean to
us. But what truly makes us unique is not just our DNA but also the environment
we live in and our health history.

How will you study my DNA?

A team of scientists will use your saliva sample to conduct a whole genome
sequencing test, which looks at almost all your DNA.

What will you do with my data and sample?

We will store your data securely, along with the data from all other
participants who take part in CUPMI. Saliva samples will be stored temporarily
until they are analyzed and then they will be safely discarded. Saliva samples
will not be stored for long-term use. Researchers will use the data to make
discoveries about how genes and environment affect health long into the future.
There is no limit on the length of time we will store your data, except if you
withdraw (“quit”), or there are limits imposed by law.

How will you protect my identity?

Protecting your identity is a top priority for us. Your identity will remain
confidential. We have designed the process with this in mind. Here are a few of
the steps we will take:

 * We are working with Rymedi to ensure all identifiable participant information
   is stored in a HIPAA compliant database. Information shared between Self
   Regional Healthcare and the Clemson University study team will be encrypted
   and transferred via secure file transfer protocol.
 * A limited number of study team members will have access to identifiable
   information.
 * Researchers conducting data analysis will only have access to de-identified
   information and will not attempt to re-identify in any capacity the
   information pertaining to any participant. Data obtained during this study
   will not be available to any other researchers.

Are there risks?

The main risk of participating is in the event of a data breach. A data breach
is when someone sees or uses data without permission. If there is a data breach,
someone could see or use data about you. Even without your name, there is a
chance someone could figure out who you are. They could misuse your data.
However, we believe the chance of this happening is very small, but it is not
zero. In the rare situation of a data breach, we will notify participants
immediately.

Researchers will use basic facts like your ancestry, age, and sex in their
studies. These data help researchers learn if the things that affect health are
the same in different groups of people. These studies could one day help people
of the same ancestry, age, or sex as you. However, there is a risk that others
could use these data to support negative ideas about groups.

Taking part in CUPMI may have risks that we don’t know about yet. We will tell
you if we learn anything that might change your decision to take part.

Are there benefits?

CUPMI is a research program. You will not get direct medical benefits from
participating in this study. You will not benefit personally from giving a
saliva sample for this project because this kind of research usually takes a
long time to produce medically useful results.

That said, you may indirectly benefit from participating in CUPMI. For example,
you may access results about where your ancestors may be from and results about
the study.

In the long-term, if the study expands, researchers will be able to use the data
from this study in future studies. They will look for patterns to learn more
about what affects people’s health, leading them to discoveries or solutions
that prevent diseases, such as cancer, heart disease, and diabetes, and improve
the health of individuals and families. You will be helping researchers make
discoveries that may help future generations live happier and healthier lives.

Are there any costs?

There are no direct costs to taking part in the CUPMI proof of concept/pilot
study. We will not bill your insurance or charge you for running any tests on
your saliva samples.

Are there any payments?

Participants will receive a one-time $25 gift card for participating in the
study upon completion of enrollment surveys and saliva collection.

Your data will be used by researchers to make discoveries. If any of their
studies lead to new tests, drugs, or other commercial products, you will not
receive any profits. These inventions will be the property of the researchers
who develop them.

Will I be able to see my data?
You will be able to access a signed pdf copy of this form, your signed HIPAA
authorization form (if you agree), your survey responses, and your ancestry
results (if you select to receive them), through the CUPMI Participant Portal
powered by Rymedi.
Will I find out the results of the research?
CUPMI involves two kinds of results: results about you and results about the
group.
 1. We may tell you if there are results about you. You will be able to choose
    if you want to see these results.

 * Ancestry related results. These results will capture your genetic ancestry. A
   genetic ancestry report will show where your ancestors lived. You will have a
   choice to tell us if you would like to receive ancestry results.
 * DNA related results. You will not receive DNA results for this proof of
   concept/pilot study. However, if the study expands, there are plans for
   providing DNA results in future efforts, and you will have the opportunity to
   tell us now if you would like to be recontacted to decide later about
   receiving your DNA results.

 2. We will share information researchers learn about health from studying data
    from people in CUPMI study. You will be able to access this information, as
    well as general news and updates about CUPMI via the CUPMI Participant
    Portal at precisionmedicine.clemson.edu.

What if I join and later change my mind?

Taking part in CUPMI is voluntary. You can choose to join or not. No matter what
you decide, now or in the future, it will not affect your medical care or
insurance benefits.

If you decide to join CUPMI, you can change your mind at any time. If you decide
you want to withdraw (quit), you need to tell us. You can tell us through the
CUPMI Participant Portal.

 If you withdraw from the study, all your information including contact
information, EHR, DNA, health, and lifestyle data will be deleted and will not
be part of the CUPMI database going forward.

SRH employees: Any information that is shared as part of this research will not
impact your continued employment or impact any assessment or employee
performance evaluation.

Who can answer my questions?

If you have questions or concerns about the CUPMI research study, please email
the study team at cupmistudy@clemson.edu or visit the website at
www.precisionmedicine.clemson.edu for additional information.

If you have questions about your rights in this research study, please contact
the Clemson University Office of Research Compliance (ORC) at 864-656-0636 or
via email at irb@clemson.edu. The Clemson Institutional Review Board (IRB) will
not be able to answer some study-specific questions. However, you may contact
the Clemson IRB if the research staff cannot be reached or if you wish to speak
with someone other than the research staff.

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