Chordoma Foundation

Reflections on the first Pediatric and Young Adult Chordoma Clinic

Pediatric and Young Adult Chordoma Clinic

Last month, on April 16-18, the first-ever chordoma-specific clinic for pediatric and young adult patients was held at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. Conducted in collaboration with the My Pediatric and Adult Rare Tumor (MyPART) Network at the National Cancer Institute (NCI), it brought 12 patients and their families together with several of the most experienced doctors and specialists in the field of chordoma treatment.

Over the course of the clinic, each of the families in attendance met with a panel of experts – some of whom are permanently based within the NCI and others who practice in outside clinical and research facilities – to discuss their medical history and receive personalized feedback about potential treatment and care options moving forward.

In addition to offering medical insights and guidance, the clinic also provided the families with an opportunity to foster close personal bonds with one another.

About the MyPART Network

MyPART NetworkThe My Pediatric and Adult Rare Tumor (MyPART) Network aims to engage patients in rare tumor research and connect them to a network of advocates, physicians, and researchers to develop effective therapies and improve care for rare cancer patients. The clinics hosted by the MyPART Network are designed to help doctors and scientists learn what to study about rare cancer and guide regulatory experts in designing experiments and clinical trials to have the best chance of drug approval.

Chordoma is the third rare disease to be included in the MyPART clinical program, along with Pediatric and Wild-type GIST and Medullary Thyroid Carcinoma.

Part of the NIH’s Rare Tumor Patient Engagement Network, the MyPART team is made up of doctors, scientists, nurses, and support staff led by Senior Investigator Brigitte Widemann, M.D. Dr. Widemann, a 26-year veteran of the NCI, currently serves as the Deputy Director of the Center for Cancer Research and Chief of the Pediatric Oncology Branch.

About the Clinic

For patients and families, the Chordoma Clinic was an opportunity to meet with a “dream team” of chordoma experts, as Mr. Frank Fernandes, father of participant Frankie Fernandes, refers to them. For doctors and specialists, it was a chance to share research, discuss clinical experiences, and brainstorm model systems of treatment and care.

The clinic began with a day-long meeting of chordoma doctors and specialists during which they reviewed and discussed the medical history of every participant, sharing their knowledge and suggestions about possible next steps. Later that evening, they joined patients and family members for a welcome dinner.

Over the course of the following day, every patient and family in attendance participated in personalized meetings with a series of specialists including oncologists, neurologists, genetic counselors, psychologists, pain management experts, endocrinologists, and nutritionists to discuss their experiences and talk through potential treatment options and pathways. In between these meetings, there was time to talk with each other and share stories, and a few of the younger ones were kind enough to let a certain CF staff member play a few rounds of UNO and Go Fish with them. (I had so much fun!)

 

“We found the whole experience of the clinic to be positive. It was wonderful to sit with neuro-oncology, endocrine, and genetic specialists and be able to discuss [our daughter]. We had many questions answered and [learned] some things to ask our doctors back at home.”
– Carolyn Laney, mother of chordoma patient Neve (8 years old)

 

Halle and Carolyn Kraczywk

“Though somewhat overwhelming at first, the clinic was ultimately very reassuring and gave us the confidence to know we are making the most informed care decisions possible.”
– Carolyn Kraczywk, mother of chordoma patient Halle (10 years old)

“Being part of this group of experts was inspiring. The only questions about chordoma we couldn’t answer for these families were questions to which the answers are not yet known.”
– Dr. Paul Gardner, Associate Professor of Neurological Surgery at the University of Pittsburgh School of Medicine and Director of the UPMC Center for Cranial Base Surgery

 

Lodging and travel for all participants were provided by the NCI. Many of our younger patients and their families stayed onsite at the Children’s Inn at NIH – a vibrant residential “place like home” for families with children participating in research studies at NIH – while older patients stayed with their families in area hotels.

Many thanks to the talented team at the NIH for hosting this inaugural event, and for inviting our community members to benefit from the state of the art resources available at the NIH Clinical Center. Thanks also to the chordoma experts who volunteered their time and expertise onsite:

  • Dr. Gregory Cote (Medical Oncology, Massachusetts General)
  • Dr. Paul Gardner (Neurosurgery, University of Pittsburgh)
  • Dr. Christopher Heery (Medical Oncology, Bavarian Nordic)
  • Dr. Norbert Liebsch (Radiation Oncology, Massachusetts General)
  • Dr. Robert Malyapa (Radiation Oncology, University of Maryland)
  • Dr. Debraj Mukherjee (Neurosurgery, Johns Hopkins University)
  • Dr. Deric Park (Neuro-oncology, University of Chicago)
  • Dr. Nick Rowan (Otolaryngology, Johns Hopkins University)
  • Dr. Carl Snyderman (Otolaryngology, University of Pittsburgh)

Pediatric and Young Adult Chordoma Clinic

 

Stay tuned for more details about future research opportunities made possible by our ongoing collaboration with the MyPART Network.


Questions? Contact a Patient Navigator.



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