About the Clinic


Patient Charts

We are pleased to announce the second annual Multiple Endocrine Neoplasia Type 2 (MEN2)/Medullary Thyroid Carcinoma (MTC) Clinic at the National Institutes of Health (NIH). The study of rare diseases is difficult. However, our belief is that a gathering of patients and expert healthcare providers will generate a wealth of information to better understand Pediatric and Adult MEN2 and develop new therapies for MTC. The clinic is paid for by federal tax dollars. There is no cost to the patient or obligation to participate in a clinical trial.

Our clinic is designed to provide the MEN2/medullary thyroid cancer patient with a comprehensive consultation visit to discuss their diagnosis and treatment options. Many participants use this service to get a second opinion.

The clinic is comprised of a panel of physicians and health care providers within endocrine oncology, radiation oncology, medical oncology, radiology and pathology. These specialists come together to examine your case in detail, provide recommendations and determine your treatment options, which include the potential for clinical trial participation at the National Institutes of Health (NIH).


Patient Case Manager

BJ Thomas, RN, BSN
Research Nurse Coordinator
Tel: 240-858-3633
NCIMEN2MTCClinic@mail.nih.gov


The NIH MTC Clinical Team


John Glod, MD, PhD Pediatric Oncologist
Ann Berger, MD Pain Management Director
Joan Galil, LCSW-C,LICSW Clinical Social Worker
Jaydira Del Rivero, MD Medical Oncologist and Adult Endocrinologist
Joanna Klubo-Gwiezdzinska, MD, PhD Endocrinologist
Alex Ling Radiologist
Jamie Marko, MD Radiologist
Maria J. Merino, MD Pathologist
Naris Nilubol, MD Endocrine Surgeon
Karel Pacak, MD, PhD Neuroendocrinologist
Margarita Raygada, PhD MSC Staff Genetic Counselor
Samira Sadowski, MD Endocrine Surgeon
Constantine Stratakis, MD, D(med)Sci Pediatric Endocrinologist and Medical Geneticist,
Scientific Director at NICHD
BJ Thomas, RN, BSN Clinical Research Nurse
Lori Wiener, PhD Pediatric Psychosocial Specialist

Consultations


As a part of your consultation visit, you will be asked to provide us with medical records or we can request it on your behalf. You may also be asked to undergo other tests and procedures before coming to clinic to help facilitate the treatment discussion.


Frequently Asked Questions


Am I eligible?

You are eligible to attend the clinic if you are a child or a young adult with MEN2/MTC.

How will I benefit by participating?

You will be seen by some of the national leaders in the field of MEN2/MTC, comprised of geneticists, medical oncologists, pediatric oncologists and pediatric surgeons. In addition, we have assembled a team of healthcare providers to help manage some of the problems associated with MEN2/MTC. This includes physicians who specialize in pain management, dieticians and psychosocial experts. Pathologists and radiologists will also participate. We would like to stress that it is not our intention to take over your care from your oncologist. However, the number of experts from different fields who are thinking about the specifics of your medical history may allow us to make recommendations to your oncologist and surgeon, with the goal of improving your health. Additionally, you will have the chance to interact with other patients and families.

Will this clinic benefit others?

The contribution that your visit to this clinic will make to the care of others cannot be emphasized enough. Our philosophy is that the opportunity to evaluate every patient with MEN2/MTC will help the medical community understand the mechanisms that underlie this disorder. We will have the opportunity to compile details of your history, response to prior treatments, radiographic assessments and molecular studies. The data for a single patient may not provide much insight. However, when combined with that of all other patients, the information will generate many leads to help us better understand the genetic and clinical elements of MEN2/MTC.

What is the goal of the clinic?

The data that we obtain from these clinics will help us to design innovative treatment protocols. These protocols may have a biological component (to see which biochemical pathways are activated in the tumor), a molecular component (to determine which genes are disrupted), a radiographic component (to assess different imaging modalities) and a pharmacokinetic component (to see if drug levels in your body are appropriate). Your oncologist will remain in charge of your care. Our role will be to help provide any elements of your care that may not currently be available at your hospital.

When is the clinic?

The NIH MEN2/MTC Clinic will usually occur once per year in February. Please contact us for the specific dates.

How do I register?

Please send an e-mail to NCIMEN2MTCClinic@mail.nih.gov State your wish to attend subsequent clinics. A return e-mail will be sent to you shortly thereafter with further instructions.

Who will pay for this visit?

The MEN2/MTC Clinic is sponsored by the National Cancer Institute (NCI) and the National Institute of Child Health and Human Development (NICHD). Some expenses will be paid by the NCI and NICHD. Please see Travel Information for more details, especially for patients age 21 and older.

What information or medical records are required?

  • All medical records about your MEN2/medullary thyroid cancer diagnosis
  • Pathology slides and report
  • Imaging studies on disc and report

How will I remember everything that was said?

Video and audio recording is not allowed. We will send you a letter after your visit that will summarize our recommendations. You may also request the progress note from the Medical Records Department of NIH, after your visit.