Attachment 11 Annual Newsletter

Thomas Dawber
Memorial Scholarship

Trustees of Boston University
National Heart, Lung, and Blood Institute
Framingham Heart Study

Last year, the Friends of the Framingham
Heart Study awarded scholarships to two

NONPROFIT
U.S. POSTAGE

PAID

FRAMINGHAM, MA
PERMIT NO. 325

73 Mt. Wayte Avenue
Framingham, MA 01702

high school seniors planning to attend
college. Friends President John Galvani and

The Framingham Heartbeat
The annual newsletter for the participants of the Framingham Heart Study | Spring 2015

The Framingham Heart Study is a project of the National Heart, Lung, and Blood Institute and Boston University.

RETURN SERVICE  REQUESTED

the board members announced two scholarships for 2015 based on an essay contest: a
$1,000 scholarship and a $500 scholarship.

Current Projects

Eligibility: Open to children, step-children,

For Original participants:

and grandchildren of FHS participants.

• FHS/Health eHeart Study Pilot Project 3
• Medical history update
6
• Electronic Device Survey Update
3

Applicants must be graduating from high
school this year and planning to attend
college in Fall 2015.
To apply, only two items are needed: an

2014 Dawber Scholarship recipient, Hailee Gelinas, is pictured with (left to right) Friends of the
Framingham Heart Study treasurer, Peter Allen and president, John Galvani. Hailee is a freshman
at Quinnipiac University, studying nursing and then plans on pursing her MD degree.

The Framingham Heart Study Staff is here for you!
Page

Please call us at (508) 872-6562 or (800) 854-7582 if we can be of
any assistance to you.

For Offspring (Second Generation)
and Omni 1 participants:
• FHS/Health eHeart Study Pilot Project 3
• Medical history update
6
• Brain MRI and cognitive testing
4
• Osteoporosis study
4
• Sleep study
3
• Electronic Device Survey Update
3

email with the applicant’s name, address,
telephone number, and college and career
plans (roughly a two-sentence description);
and a 1,000-word essay titled “How does
FHS help improve public health.” Applicants
are welcome to tell a story, conduct an inter-

For Third Generation and Omni 2
participants:

view, or pursue any angle of interest. Please
fact-check and proofread before submitting.

• FHS/Health eHeart Study Pilot Project 3
• Medical history update
6
• Electronic Device Survey Update
3

Please email the essay as an attachment
to Emily Manders (emanders@bu.edu) by
Thursday, April 23, 2015. We’ll confirm
receipt of all essays within one business day.
If you don’t receive a confirmation, please
call (508) 935-3443.
The Friends will review the essays and notify recipients by May 29, 2015. Recipients
will be invited to accept their awards at the
FHS research center.

2014 second-place Dawber Scholarship recipient, Katelyn Springsteen, pictured with (left to right)
Friends of the Framingham Heart Study treasurer, Peter Allen, and president, John Galvani. Katelyn
is a freshman at New Hampshire Technical Institute, Concord’s Community College in Concord, NH
with a major in Radiologic Technology.  

A Message from the Friends of the Framingham Heart Study:
Greetings, fellow participants. We are participant volunteers from the
Offspring (Second Generation), Third Generation, and Omni cohorts
who meet periodically throughout the year as members of the Board
of Trustees for the Friends of the Framingham Heart Study. With funds
donated to the Friends, we provide support for items and activities at
FHS, such as occasional travel grants to FHS investigators attending
scientific conferences, audio-visual equipment for long-distance
conferencing with collaborators, annual scholarships to high-school
graduates going to college, and the ECG cards sent to participants
after clinic visits. With your help, we’ll be able to do more to support
FHS in its ground-breaking research for improving public health related

5 The Framingham Heartbeat Spring 2015

to heart disease, diabetes, cancer, sleep disorders, aging, and
Alzheimer’s disease. The Friends of the FHS is a 501(c)(3) non-profit
organization supported solely by donations. We invite you to
contribute in the memory of or in honor of a family member or friend.
No donation is too small or too large and all are tax deductible.
To make a donation, please mail a check, made out to
“Friends of the FHS” to:
Lynda Norton, ATTN: Friends of the FHS,
73 Mt. Wayte Ave., Suite 2, Framingham, MA 01702.

Medical History Update –
Why is it Important?
One of the most important ways you can contribute to the Study
is by providing us with your medical history information. In
FHS research, knowing whether and when a disease developed
brings us closer to learning, for example, the link between high
blood pressure and stroke. Without your examinations and
medical history updates, our estimate of these relationships are
unclear. Your regular visits and medical history updates make our
understanding of disease more accurate and focused. Even if you
feel well or your health has not changed in several years, these
updates help us document your health status.
If you receive a mailed Medical History Update form, a password
is enclosed and you have the option of completing the form
online. You still have the option of returning the form by mail or
completing it on the telephone with one of our staff. Please call
Mary Ann Crossen (508-935-3430) if you have any questions
about the form or would like to complete it on the phone. We
greatly appreciate your efforts to keep our records current.

6 The Framingham Heartbeat Spring 2015

Contact Us
Receptionist
(508) 872-6562 or (800) 854-7582
Brain Donation
Linda Farese
(508) 935-3488, (800) 248-0409 or lfarese@bu.edu
Maureen Valentino
Original, Offspring (Second Generation) Third Generation
Participant Coordinator
(508) 935-3417, (800) 536-4143 or maureenv@bu.edu
Paulina Drummond
Omni Coordinator
(508) 935-3485, (888) 689-1682, or pautras@bu.edu
Linda Farese
Brain MRI, Cognitive Testing, Stroke Coordinator
(508) 935-3488, (800) 248-0409 or lfarese@bu.edu

NHLBI to fund FHS for another 5 years via new contract!!
Next examination of Gen 3 cohort to begin in 2016!

What’s New and What’s Next at the FHS?
The past twelve months were busy times at FHS. Offspring
Exam 9 and Omni-1 Exam 4 were completed and the data
from these exams are being studied. Over 200 scientific papers
were published in 2014, authored by our own FHS faculty and
by investigators far and wide who apply to use FHS data and
frozen samples from our repository. FHS investigators continue
to successfully obtain research funding for ground-breaking
studies including several American Heart Association Cardiovascular Genome-Phenome Study (CVGPS) awards to investigate new areas of interest in cardiovascular disease research.
New research ideas are proposed every month. Some of the
topics of current FHS research include investigations into heart
failure, atrial fibrillation, stroke, cognitive decline, diabetes,
sleep disorders, osteoporosis, lung disease, and other diseases.
New approaches to studying these diseases at the FHS include
analyses of genetic data, social networks, imaging data, and
information collected from participants by mail and internet.

Plans are underway for Exam 3 of the Third Generation and
Omni group 2 participants. In addition to measures of glucose
and cholesterol, several exciting research applications have
been reviewed favorably at the National Institute of Health to
study blood vessel stiffness, risk factors for bone loss, and new
measures of cognitive function to better understand the brain
and find ways to prevent Alzheimer’s disease. Investigators are
considering using electronic technologies to monitor diet, exercise, blood pressure and heart rate to investigate whether this
approach may lead to ways to prevent heart disease. The FHS
staff plan to use electronic technologies in the research clinic to
make the exam more efficient. Stay tuned for an exam start
date in March 2016. The FHS staff will continue to contact all
participants for medical history updates and opportunities to
participate in additional research studies.
We hope we can continue to rely on your participation in these
new projects. You are the Framingham Heart Study.

www.framinghamheartstudy.org
www.framinghamheartstudy.org

Whole Genome Sequencing
at FHS Underway
Great news!! FHS has been selected for inclusion in a new
National Heart Lung and Blood Institute (NHLBI) project to
analyze the complete DNA sequences of participants in a collaboration involving several ongoing population studies. Whole
Genome Sequencing (WGS) helps us determine the complete
DNA sequence of an individual’s genome to characterize differences in the sequence of bases that form the building blocks of
our DNA. This effort represents a major step in the genome wide
research begun in FHS over a decade ago and will produce far
more detailed genetic information about individuals than previous genotyping endeavors. When the new genetic information is
linked to FHS data on the observable traits that have been measured over the years, researchers can discover new links between
genes and traits measured in FHS participants such as risk factors and heart, lung and brain diseases. Some DNA specimens
from FHS storage at the Boston University FHS genetics lab
have been shipped to a specialized laboratory for whole genome
sequencing. FHS consent restrictions will be followed; DNA will
be included in the WGS project only from among individuals who
have previously consented to participate in FHS genetic studies.
FHS investigators plan to continue their collaborations with other scientists to make important discoveries. FHS WGS data will
be made available along with similar data from other NHLBI
studies to investigators world-wide with appropriate approvals
and protection of confidentiality. The Framingham Study is especially valuable in this new project because of the participation
of so many family members and the great number of traits that
have been measured over the years and stored in our data repository for research. With this WGS project, FHS continues to be
a leading study in the personalized genomic research into health
and common diseases promoted by the recently announced Precision Medicine Initiative. Thank you for your tremendous and
precious contribution to health science and genetic research.

Noteworthy News
The American Heart Association awarded its 2014 Population
Research Prize to Vasan S. Ramachandran, M.D., of Boston University School of Medicine and Principal Investigator of
The Framingham Heart Study, “for brilliantly seizing upon
opportunities to translate cutting-edge bench science into an
epidemiological context, thereby making fundamental contributions to identifying systemic markers for cardiovascular risk,
both here and in developing countries.” Dr. Ramachandran has
made many important contributions to cardiovascular epidemiology. These include systemic markers of cardiovascular risk,
hypertension, congestive heart failure, risk re-classification and
diseases in developing countries. A native of India, the Boston
scientist continues to collaborate and conduct research there. Dr.
Ramachandran’s findings recognizing four stages of risk leading
to symptomatic heart failure have been incorporated into AHA’s
informational materials. “This appreciation of heart failure
progression represents a critical step toward preventing its emergence.”
Emelia J. Benjamin, M.D., ScM, professor of Medicine at
BUSM, professor of Epidemiology at BU School of Public Health,
co-Principal Investigator of The Framingham Heart Study
and attending cardiologist at Boston Medical Center, has been
selected as the recipient of the prestigious 2015 American Heart
Association (AHA) Paul Dudley White Award.
The award, named in honor of one of Boston’s most revered cardiologists, Dr. Paul Dudley White, a founding father of the AHA,
is given annually to a Massachusetts physician who has made a
distinguished contribution to the Association’s mission of building healthier lives, free of cardiovascular disease and stroke.

Reporting FHS Results:

It is very important that you, as an FHS participant, understand the difference between the RESEARCH RESULTS that FHS generates and the CLINICAL TEST RESULTS your doctor sends you after your personal medical check-up. FHS research measurements
are chosen to answer scientific questions. The FHS programs are not designed for monitoring health of individuals. However, FHS
does eventually send some individual results to you and your doctor. Please look at the table below to see seven ways results from FHS
visits differ from results of an annual check-up with your physician.
1. Purpose

FHS VISIT

ANNUAL CHECK-UP BY YOUR PERSONAL PHYSICIAN

To collect information for research on a population to answer
specific research questions.

To collect information about you for your health to guide health care recommendations and treatments.

2. Tests and Measures
May include novel tests. May take years of FHS work to analyze
and Timing of Results information and arrive at research results.

Standard tests for overall personal health evaluation. Usually returned in a few
days from testing.

3. Consent

FHS research is conducted according to the approved FHS
informed consent for participation in the research and approved
study protocols. Samples of FHS consent forms are displayed at
www.framinghamheartstudy.org/researchers/concent-forms.php.

Patient care is conducted according to rules governing the physician-patient
relationship, including consent to treatment. Confidentiality is often covered by
The Health Insurance Portability and Accountability Act of 1996 (HIPAA).

4. Standards

Follows standards for high quality research.

Follows standards for health care.

5. Sending Test Results
to Individuals

Most results are published in scientific journals based on the FHS Your physician sends you results of standard tests from your annual check-up
population.
with recommendations for follow-up.

Framingham Heart Study/Health
eHeart Study Pilot Project
FHS investigators are working with scientists at the Health
eHeart Study based at the University of California in San
Francisco to conduct a pilot study of 200 FHS participants.
The purpose of the pilot study is to determine whether
electronic data collection, including internet-based and
wearable sensor data, is possible for some FHS projects.
If possible, this would help pave the way for a larger study
in all interested FHS participants.
To be eligible, FHS participants need to have a working
email and an iPhone, and live within one-hour of FHS. Once
recruited into the study, FHS participants will enroll either
remotely by internet, or will come to FHS. Participants will
complete electronic visits, and have the option to select up to 4
wearable devices, including a Fitbit activity monitor, a wireless
scale and blood pressure device, and a wireless electrocardiography (ECG) device. FHS participants will be actively involved
in the pilot for 3 months, and then we will continue to collect
device data for up to one year. Please contact Emily Manders
(emanders@bu.edu) if you are interested in finding out more
about this pilot study.

Electronic Device Survey Update
FHS investigators are thinking about using new electronic
tools to conduct research on your heart and general health. We
are interested in finding out what kind of electronic tools you
use, including computers, internet, and cell phones.  We are
doing this to understand whether FHS participants would be
interested in participating in research involving digital devices
and smart phones. Of course, we understand that mobile
technology isn’t for everyone, and we want to reassure all of
you that no one will be left behind if you don’t feel comfortable
with these kinds of technologies. Mobile health technology may
represent a scientific advance. However, FHS investigators are
not working on behalf of any companies. We are also aware of
potential security issues, and we are doing everything we can

to minimize the possibility of a security breach. Because this
information is being collected remotely, we need to make sure
that we can link your responses with your FHS data. This is
the reason that we are asking for your date of birth.
We thank the nearly 4000 FHS participants who have already
responded, including almost 1300 Offspring, 2400 Third
Generation, and 283 Omni participants. We will be mailing
paper versions of the questionnaires, so there is still a chance
to respond if you haven’t filled yours out yet! If you would like
more information about this, please contact Maureen Valentino (maureenv@bu.edu or 800-536-4143).

Ongoing Sleep Study
with Easy-to-Use Home Monitors
The FHS Sleep Study is investigating factors that affect sleep
quality using an experimental, FDA-approved monitor. The
M1 recorder identifies stable and unstable sleep by detecting
changes in your heart rate and breathing patterns. The study
hopes to identify metabolic and cardiovascular changes linked
to sleep quality.

Grants and contracts with specific research objectives on the
FHS population.

Health insurance and you.
The objective is to provide personal health care.

7. Overall Value
and Bottom Line

Moving SCIENCE forward. Many of the tests used today in
health care were based on FHS research.
WE CAN’T DO GOOD FHS RESEARCH WITHOUT YOUR
PARTICIPATION!

Taking care of YOU.
DON’T MISS YOUR CHECK-UPS WITH
YOUR HEALTH CARE PROVIDERS!

2 The Framingham Heartbeat Spring 2015

The Framingham Study Neurology team thanks all participants who have volunteered for brain MRI, cognitive testing
and a neurological examination. Using this data in 2014
alone, over 40 papers have been published, describing new risk
factors, genes and blood markers for Alzheimer’s disease and
stroke. Also, the Heart Study data are crucial to a national
effort to identify possible new drug targets for these diseases.
We will be reaching out to you to obtain one more MRI and
cognitive test; this will help us understand how the brain
changes over time. If you have not had a brain MRI since
2009, please call our coordinator Linda Farese at 508-935-3488
and she will be happy to schedule one for you.
Over 200 participants will also be selected at random and invited to have sophisticated PET scans for brain amyloid; these
scans will be done at the Massachusetts General Hospital.
Please call Linda Farese at 508-935-3488 if you would like to
learn more about this new test.

Have you had a recent Stroke?
Please let us know
Over the years, your participation has helped researchers at
FHS study the factors that lead to strokes, how they occur, and
what can be done to prevent them over a lifetime. Stroke is an
emergency, and anyone with symptoms such as facial weakness,
sudden difficulty speaking, weakness on one side of the body, or
sudden vision loss should call 9-1-1 and get immediate help.
If you have had a recent stroke or received medical care for
stroke symptoms, FHS would like to know as soon as you or a
family member can contact us. Participants are asked to call
The Framingham Stroke Study at 508-935-3488. We would like
to talk to you and set up an in-person appointment when it is
safe and convenient for you. We greatly appreciate your efforts
to help us monitor for and research this disabling disease.

Interesting fact
Osteoporosis is

Previous sleep studies performed in the 1990s required
bulky equipment and significant setup time. The new
equipment is the size of an iPod and wristwatch. These
devices are mailed and can be set up without assistance.
With your help we hope to show that small devices can be
used successfully in sleep medicine.

a silent disease
that can result in

Most Offspring (Second Generation) and Omni 1 participants
are eligible to participate and will be contacted in the coming
months. FHS thanks those who have already participated.
Alternatively, to see if you qualify for the FHS sleep study,
please contact Barbara Inglese at (508) 935-3451; toll free at
(800) 601-3582, or via email at bji@bu.edu or Emily Manders
at (508) 935-3489, or via email at emanders@bu.edu

fractures and loss
of independence.
Yet less than
25% of the U.S.
Osteoporosis Study Measures 3D Bone Architecture
In a preliminary analysis of 381 Offspring participants seen in 2012-2013, we found
that individuals with greater amounts of fat in their abdomen tended to have more
small holes in the outer shell of bone in their forearm. The analysis suggests that
having too much fat may be bad for parts of the skeleton; another good reason to shed
those holiday pounds.
We are scheduling Offspring and Omni 1 participants for this important callback visit,
and hope many participants will join our study in its final year. We thank those of you
who have already participated. As before, the exam will also include the traditional
bone density “DXA” test and the results will be provided. Please call Linda Farese for
an appointment for the FHS Bone scan and Neurology/MRI testing at: 508-935-3488.

Some individual test results such as blood pressure and cholesterol
levels are sent to you and your physician to consider.
6. Support

Brain MRI and Cognitive Testing

population over
65 years of age
have their bone
density tested for
osteoporosis.

Brent Ardaugh/FHS

Nancy Coppelman at FHS asking “What is the best way for me to reach you?”

3 www.framinghamheartstudy.org

The Nonin WristOx (left) measures blood oxygen during sleep. The M1 recorder
(right) measures the electrical activity of the heart.

4 The Framingham Heartbeat Spring 2015