St. Jude Collaborative Rare Endocrine Tumor Referral Clinic

  

Providing expertise, education and support for children with rare endocrine tumors and their families

 

St. Jude Children’s Research Hospital is a leader in pediatric research and treatment for rare endocrine tumors, such as thyroid and adrenocortical tumors. St. Jude conducts a number of clinical research studies on rare endocrine tumors and also initiated and leads the International Pediatric Adrenocortical Tumor Registry (IPACTR).

The St. Jude Collaborative Rare Endocrine (CoRE) Tumor Referral Clinic is a two-day clinic that brings patients and families to St. Jude for expert consultations, medical examinations by leading specialists, educational seminars and an introduction to tumor-related resources. In addition, if a patient qualifies for a St. Jude clinical trial, our center may be able to offer unique expertise in treatments that include surgery and radiation therapy as well as immune and targeted therapies.

Patient families who attend the CoRE Tumor Referral Clinic are provided travel, housing and meals during the onsite consultation. Following the clinical evaluation, St. Jude will provide a written report, with treatment recommendations, to the family and referring physician.

The next St. Jude CoRE Tumor Referral Clinic will be held June 29-30, 2017, in Memphis, Tennessee.

Catherine Lam, MD, MPH

Catherine Lam, MD, MPH

Patient Eligibility

Patients must:

  • Be 21 years or younger
  • Be diagnosed with one of the following:
    • Thyroid carcinoma
      • Differentiated thyroid carcinoma, including papillary or follicular
      • Medullary thyroid carcinoma
    • Adrenocortical tumor
      • Adrenocortical carcinoma
      • Adrenocortical adenoma
      • Adrenocortical tumor of undefined histology
  • Have a physician referral
  • Have tumor tissue available for review
  • Be treated or followed by a physician who agrees to the consultation

The benefits for patients and families include:

Receive Expert Consultation

Within this specialty clinic environment, the multidisciplinary team includes pediatric oncologists, pediatric endocrinologists, pediatric cancer surgeons with expertise in rare endocrine tumors and in ear, nose and throat surgery, and genetic predisposition specialists in a specialty clinic environment. A variety of other experts, such as pathologists, diagnostic radiologists and nuclear medicine specialists, radiation oncologists, psychologists, child life specialists, pharmacists and disease expert scientists will also be available.

Connect with Other Families

Thyroid cancer and adrenocortical carcinoma are considered rare pediatric cancers, which can make it difficult for patients’ families to connect with one another. The St. Jude Collaborative Rare Endocrine Tumor Referral Clinic brings patients and families together for an opportunity to share their experiences and challenges and provide support.

Learn about Resources

In addition to the consultation, patients’ families are invited to meet with multidisciplinary experts in rare pediatric endocrine tumors at an onsite educational seminar.

Participate in Life-Saving Research

St. Jude is at the forefront of genomic research for pediatric cancers. For example, scientists at St. Jude identified changes in a specific gene that increase the likelihood a person will develop adrenocortical tumors. They also created an adrenal tumor model in the laboratory that researchers use to test drugs for adrenocortical tumors.

St. Jude takes part in international studies to learn how to provide the safest and most effective treatments for patients with small tumors and tumors that have spread. Patients who participate in the CoRE Tumor Referral Clinic may be eligible to take part in future St. Jude research on these and other rare endocrine tumors.

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