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
You are eligible to attend the clinic if you are a child or a young adult with MEN2/MTC.
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.
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.
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.
The NIH MEN2/MTC Clinic will usually occur once per year in February. Please contact us for the specific dates.
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.
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.
- All medical records about your MEN2/medullary thyroid cancer diagnosis
- Pathology slides and report
- Imaging studies on disc and report
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.