How to Collaborate

In order to achieve positive outcomes and affect change through the ETMR One project, it is critical that we establish strong partnerships with each patient’s treating oncologist. As the primary decision-maker for your patient, your input and participation is of the utmost performance. Here are the ways you can help move our project forward.

Registry On-boarding

It is our goal to have the registry on-boarding process run seamlessly and to minimize any time burden for collaborating physicians. One of our registry coordinators will work with your staff to obtain all necessary source documentation including medical records, radiographic imaging, and pathology specimens, if available.

Our registry coordinator will be responsible for extracting data from the medical record and complete the required case report forms for the registry. Radiology studies will be de-identified, uploaded, and stored in the research picture archiving and communication (PACS) system for Hackensack Meridian Health. All paraffin blocks/slides and frozen tissue will be sent directly to the Children’s Brain Tumor Network repository, located at The Children’s Hospital of Philadelphia.

We ask that collaborating physicians notify ETMR patient families about our registry. Interested patients/families may then contact us directly to find out more information and ask any questions. If they express a desire to participate, one of our registry coordinators will contact the patient/family to obtain written informed consent/assent.

Consensus Therapy

The registry provides recommendations for a consensus therapy derived from the ETMR medical literature, the experience of leading pediatric neuro-oncologists, and clinical data from other infant brain tumor protocols. The recommended therapy can thus not be viewed as investigational, but rather as a consensus recommendation derived from available data. While not mandated, we strongly encourage physicians of patients enrolled in the registry to treat according to the recommended consensus therapy, as this will facilitate the prospective evaluation of ETMR patients using a uniform treatment approach.

The decision to follow the consensus protocol or to treat using an alternative regimen rests solely with treating physician. We are supportive of whatever treatment regimen you feel is best for your patient and encourage patient enrollment into the registry regardless of the treatment plan so that we can gather as much clinical information regarding ETMR as possible.

Medical Advisory Board

Our Medical Advisory Board will meet regularly to review the case of every registry participant and provide guidance for the clinical management of each individual patient. As a collaborating physician, we invite you to actively participate in the reviews of your patient. You know your patient’s case better than anyone and your involvement in the discussion is critical to achieving a successful outcome. Any recommendations made by the advisory board are suggestions and not binding. As the patient’s treating physician you maintain full responsibility for, and control over, their treatment.