© 2013 MGH Adolescent Neuroendocrine Unit.

How will you protect my privacy?

The Partners HealthCare System website privacy policy can be found here: https://www.partners.org/Notices/Web-Privacy-Statement.aspx

 

 

What is research?

Research is the analysis (studying) of data (information) collected with the hope of answering a question. Sometimes research is called a clinical trial or an experiment.  The information we learn from one participant will be added to the information we learn from all the other participants to create evidence that something provides or does not 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.     

 

Why should I participate in a research study?

It’s possible that you may not benefit personally from being part of a study, but your participation will help us learn more about certain diseases.  This knowledge can then help answer questions that may improve the health of future generations.  

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.  That means the PI is 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 research coordinators, research nurse practitioners, doctors, psychologists, and interns.  It takes a lot of people to help run a study! 

What can I expect at my first study visit? 

We will be excited to meet you!  At this visit you will be met by your study coordinator in the main lobby of Mass General Hospital.  Click here to find out who to look for:   The study coordinator will then accompany you to the research office, where you will meet the provider who will consent (explain) the study in full detail. 

A few past participants kindly shared their experiences with us, which you can read as well: Participant 1, Participant 2.

 

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 the study’s page to see the specific compensation. Participants will be mailed a check shortly after completion of each of the subsequent visits. Reimbursement for transportation is also offered.

 

Will my doctor receive the results from the study?

That is up to you. If you would like us to mail results from your visits to your primary care doctor we can do so. However, you will need to sign a release of information form in order for us to send your information to your doctor/s. No information will be relayed to your doctor unless you want it to be.

 

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

Most of our participants are in high school or college 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, job, or team commitments. For example, some visits can take place on your campus and we can see participants at MGH on weekends. 

 

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

Not at all! If you let us know ahead of time when you’ll be away, we can work out the dates so they fit best with your schedule. We also are able to schedule the shorter visits with your primary care doctor or a lab close to your home. 

 

I am concerned about my privacy rights.

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. 

All Studies FAQ’S

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

Great!  We’d love to have you involved!  The best thing you can do is to complete an eligibility survey for the study you’re 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. You can also call one of the Nurse Practitioners, Meghan Slattery, at 617-643-0267, or click here to email her.  If you are less than 18 we will need permission from a parent or guardian before starting the study. 

 

How much radiation will I be exposed to?

The total radiation from participation in our studies will be discussed at length during the consent process, as it varies between studies. For instance, in the Anorexia Nervosa Study, the total radiation is equal to a whole body exposure of about 0.16 milliSieverts (mSv). The dose that you will receive from participation in this research study is about the same as you would normally receive in about 20 days from background radiation from the earth and the sky.

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

That’s completely okay!  All our studies are completely voluntary and there is no penalty from stopping early.  All we ask is that you let us know you would like to stop participating. 

Brain Studies FAQ's

Is a MRI safe? 

MRI stands for Magnetic Resonance Imaging.  There are no known or foreseeable risks or side effects associated with a MRI scan, it is a painless test that avoids ionizing radiation exposure.  It is, however, not safe to have MRI scans with a pacemaker or metal present within the body.  It’s possible for the metal to distort the images we see or in some cases the scan could affect the metal or pacemaker and cause harm.  Therefore, we have a discussion about presence of any metal before you will be approved to enter the MRI room.  We even walk through a magnetic detector before reaching the MRI machine. (It’s pretty cool!)  As part of the study procedures, we review a checklist at each study visit to make sure it’s safe to have a MRI scan, so we can discuss any questions at that time.  We will also discuss MRIs in more detail during the consenting process, and if you (or your child) is interested, we can try out the MRI environment in a practice scanner. 

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

 

Tell me something I don’t know about the brain!

Your brain uses 20% of the total oxygen and blood in your body despite the fact that it only represents ~2% of the body’s total weight.

 

And a bonus one!  Sphenopalatine ganglioneuralgia is the scientific name for brain freeze. 

 

Bone Health Studies FAQ's

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, so we promote building a healthy "bone bank" to prevent bone fractures and osteoporosis.

What is the Female Athlete Triad?

The Female Athlete Triad is a spectrum of 3 components: inadequate food consumption, loss of a normal menstrual cycle, and low bone density.  

 

I am a 21 year old runner with Female Athlete Triad and have battled anorexia nervosa for years.  Will I ever decrease my fracture risk and improve my bone density?

Prevention of this condition is important to minimize complications of the female athlete triad.  Treatment requires an approach with support from a number of disciplines, including health care professionals, coaches, and family members. We know that the bone loss and menstrual irregularity characteristic of female athlete triad is a direct effect of a deficiency in the hormones necessary to build bones. These hormones are unable to be produced in adequate quantity, and in the same manner that a diabetic is given replacement insulin. Our hope with the Athlete Study is to determine the efficacy of replacing these deficient hormones as a treatment for low bone density. 

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 us 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.  

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 1 (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 bones 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. 

 

What is osteoporosis and am I at risk?

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.

 

Is osteoporosis preventable?

Yes! With a reduction of risk factors for bone loss, 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 can be produced. Other risk factors for bone loss include cigarette smoking, drinking lots of soda, chronic and heavy alcohol consumption, and excessive exercise that result 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 in girls with Anorexia Nervosa and the Female Athlete Triad. You can improve your bone density at any age!

 

What tests are available to determine bone density?

Bone density can be determined by dual-energy x-ray absoptiometry (DEXA). This is a

non-invasive x-ray of your body to measure bone mineral density (BMD). In conventional DEXA

systems, 2 energies of x-rays are used to calculate a 2-D measurement of bone density. For

this test, participants will need to remove all metal items (jewelry, underwire bras, etc.) and will

be required to change into hospital pants and gown and lie still on a table for just a few minutes

while their body is scanned by the DEXA machine. This test usually costs up to $500, but since

it is a part of the study, all participants get to keep their results from the scan for free.

 

What is a peripheral CT scan?

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

 

What is a METCART assessment/ indirect calorimetry test?

A metabolic cart assessment, sometimes referred to as indirect calorimetry, is used to estimate the number of calories burned by the body in a resting state.  After a 2 hour fast (no food or beverages except water), the participant is instructed to lie down and a clear plastic hood or “canopy” is placed over her head.  For the next 20 minutes, the participant simply lies still and breathes normally while the machine collects and analyzes her/his breath, providing an estimate of her/his metabolic rate. 

 

Where can I find treatment for my eating disorder?

Visit http://www.massgeneral.org/eatingdisorders to learn more about clinical programs and treatment options.

Female Athlete Triad Coalition

Frequently Asked Questions

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