Pediatric Endocrine-Neuroendocrine-Sports Endocrine Research

General FAQs

 

What is research?

Research is the analysis (studying) of data (information) collected with the hope of answering a question. In each study, we collect the same data from each participant. Then, we study all of the data to find evidence that helps advance our knowledge of health and science.

 

In a treatment study, we are trying to learn whether a certain medication, procedure, or treatment can provide medical benefit. In an observational study (no treatment), the information we obtain helps us answer questions about health that we had not yet known.

 

Sometimes, research is called a clinical trial.​   

 

Why should I participate in a research study?

Research is a fun and unique way to learn about healthcare and science and maybe even more about your own health! While you may not benefit personally from being part of a study, your participation will help us learn more about certain conditions. This knowledge can then help answer questions that may improve the health of future generations.

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What should I do if I want to join a study? 

Great! We are happy you are interested and would love to have you involved! The first thing you can do is to complete an eligibility survey for the study you are interested in. The links to the eligibility surveys are found on each of the study’s main pages. You can also call or email the study contact listed on each study page. If you are under 18, we will need a parent or guardian’s permission before you can participate in a study.​

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Who is involved in research studies? 

The Principal Investigator (PI) comes up with the question for a research study and is the person in charge of the study. They are responsible for how the study is done and who else works on the study. PIs have a research team to assist them in their study. The research team can be made up of study coordinators, nurse practitioners, doctors, psychologists, dietitians, and interns. It takes a lot of people to help run a study! You can meet our current team here.

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What can I expect at my first study visit? 

We are excited to meet you! Your study coordinator will greet you upon your arrival to MGH. Click here to find out who to look for, and click here for directions to the hospital. The study coordinator will then accompany you to the research office, where you will meet the provider who will explain the study in full detail and obtain your consent (permission) to participate. A few past participants kindly shared their experiences with us, which you can read here: Participant 1, Participant 2.

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How will you protect my privacy?

We take patient confidentiality very seriously and strive to safeguard your health information by following HIPAA regulations. We offer you a privacy notice document to take home with you to reference at any time during the study.

 

The Mass General Brigham privacy policy can be found here: https://www.massgeneralbrigham.org/notices/web-privacy-policy.

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I am a full-time student; will I have time to join a research study?

Many of our participants are in college or work full-time and have very busy schedules. We respect your time commitments and work hard to plan visits around your schedules so that you do not have to miss classes, jobs, or extracurricular commitments. For example, we can see participants at MGH on evenings and weekends for many visits.​

 

I will be out of town for the summer. Will that be an issue for scheduling my visits?

Not at all! Let us know ahead of time when you’ll be away, and we can work out the dates so they fit best with your schedule. We may also be able to schedule some visit components virtually or at a lab close to your home.​ 

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I don’t live in Massachusetts. Can I still participate?

Yes! We are happy to discuss travel arrangements so that you can participate in the study. We may also be able to schedule some visit components virtually or a lab close to your home.

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How do I get paid for my participation?

Participants are compensated for every visit except the screening visit, and amounts vary for each study. Please refer to your study’s page to see the specific compensation. Depending on the study, participants will receive payment via a reloadable debit card or be mailed a check shortly after completion of each visit (except for the screen). Reimbursement for transportation may also be offered if needed.

 

Will my doctor receive the results from the study?

That is up to you. We are able to mail clinically significant results from your visits to your

Primary care provider. However, you will need to sign a release of information form in order for us to send your information to your doctor/s.

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Please note: while we can share results with your doctor, we cannot offer you medical advice. Please ask your doctor if you have any questions about your results.

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What if I don’t want to be part of the study after I’ve started?

That’s completely okay. All our studies are voluntary, and there is no penalty from stopping early. Choosing to stop participating in a study will not affect your medical care at MGH or at any other hospital. All we ask is that you let us know why you would like to stop participating.

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Imaging Studies FAQs

If you have any questions, don’t hesitate to ask a staff member. We discuss imaging in more detail during the consenting process.

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What is an MRI? Is it safe?

MRI stands for Magnetic Resonance Imaging. During an MRI scan, a machine scans a particular area of your body and is able to capture images. For instance, in a fMRI (functional MRI) the machine looks at your brain structure and activity while you are resting or performing activities. It is a painless test that avoids ionizing radiation exposure.

 

It is, however, not safe to have an MRI scan if you have a pacemaker or metal present in your body. Therefore, we will review a simple checklist to ensure it is safe for you to participate in the MRI. You will not be allowed to enter the MRI room until we know it is safe. We even walk through a magnetic detector before reaching the MRI machine. We can even let you try out the MRI environment in a practice scanner if you’d like.

 

Please click here for an information video on how to prepare for your research scan.

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What is a peripheral CT scan?

A peripheral CT scan is an imaging study that helps us visualize the structure of bones at a microscopic level to produce a high-definition picture. This gives us a more detailed picture of bone than a DEXA does, and it may better predict fracture risk. The CT scan will help us determine how bone structure is affected by hormonal changes.

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What is a bone density scan (DEXA)? 

Bone density can be determined by dual-energy X-ray absorptiometry (DEXA). During the scan, a non-invasive X-ray will measure your bone density (BMD). The DEXA scan will help us determine more information about your bone strength and health.

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Will I be exposed to radiation?

Some scans contain radiation, some do not. The total radiation from participation in your study will be discussed at length during the consent process, as it varies between the different studies.

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Athlete Health, Bone Density, and Eating Disorders FAQs

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I am only a teenager– why should I worry about my bone density now?

About 90% of female bone mass is built before reaching age 20. You rely on the bone mass you accumulate by your 20s for your entire life. It is a unique and important window of time where building a healthy “bone bank” can significantly help prevent bone fractures and osteoporosis.​

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What is osteoporosis?

Osteoporosis is a condition where bones are fragile and at risk for fracture. It is often called the silent disease because many people with osteoporosis do not know they have it until they break a bone or have a bone density scan.

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Is osteoporosis preventable?

Yes, osteoporosis can largely be prevented. In order to build bone density, you need a foundation of adequate nutrition. Proper nutrition ensures that you are getting enough Calcium and Vitamin D and that the hormones necessary for bone health, like estrogen, can be produced. We also recommend common risk factors for bone loss such as cigarette smoking, drinking lots of soda, heavy alcohol consumption, and excessive exercise that results in loss of periods. Family history and genetics cannot be controlled, but beyond that, we are largely in control of our bone health. The goal of our studies is to restore bone health and hormonal health in young women with restrictive eating and the Female Athlete Triad. You can improve your bone density at any age!

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I am a 21-year-old runner with Female Athlete Triad and I keep getting stress fractures. Will I ever decrease my fracture risk and improve my bone density?

We know that the bone loss found in some female athletes, including those with female athlete triad, is a direct effect of a deficiency in the hormones necessary to build bones. It is important to prevent and treat this condition in order to protect your bone health. Treatment requires an approach with support from a variety of trusted sources, including health care professionals, coaches, and family members. One of our primary research goals is to learn more information about how to restore bone health.

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I am a 17-year-old who struggles with restrictive eating. I haven’t had my period in a few months. What do I do about this?

We know that period loss can be caused by low levels of estrogen, a reproductive hormone. The body requires a certain level of estrogen to maintain bone and menstrual health. In the REACT study, we are trying to determine whether estrogen also has a connection with the way we think and make decisions!

 

It is important to address restrictive eating in order to protect your menstrual health. Friends, family, and health care professionals can help with your recovery. Please visit http://www.massgeneral.org/eatingdisorders if you would like to learn more about clinical programs and treatment options at MGH.

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I am a 19-year-old male runner. Should I be worried about my bone health?

Even though existing research has focused on the Female Athlete Triad, male athletes may be at a similar risk for low energy availability, hormonal irregularities, and low bone mineral density. In fact, male runners have a 30% risk of stress fracture by age 20. We hope to study how large amounts of exercise affect bone health in the Male Athlete Study.

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Why are endocrinologists, "hormone doctors," studying bones?

Because endocrinologists care a lot about bones, Our bones are important for us for lots of reasons. Bones function as a storage bank for important minerals like calcium; bones also provide us with structure, support, and protection. They even help up move, the list goes on and on! Since they are part of so many important tasks, we want our bones to be as strong as possible. One way to understand the strength of a bone is to understand its “density,” which you can read more about here.

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Figuring out the density of a bone, means learning how much calcium and other minerals are  present in a particular part of bone. The more “dense” a bone is, the stronger it is and so the less likely it will be to break. The density of our bones is determined by hormones; hormones are messengers that are made in one part of the body and then travel to another part to tell organs or cells what to do. Insulin-like growth factor (IGF-1) is a bone building hormone while estrogen is a bone protecting hormone. Endocrinologists are the experts in determining what causes low (or high) levels of hormones and how to fix them when that happens. When IGF-1 and/or estrogen are low (because of excessive exercise, or inadequate caloric intake due to dietary restriction) are directly affected. Our focus with the bone density treatment studies is to work with females whose hormone levels are deficient (lower than they should be) and find the best way of replacing the hormones.