How to Refer a Patient for a Study

Identify a Study

Study synopses are available for all current studies that provide an overview of the study objectives, the inclusion/exclusion criteria and study endpoints. A parent/patient version is available as well. You may download the study brochures for distribution to potential patients or caregivers. If you feel that you have a patient who may be eligible and interested in a PHN study, feel free to contact one of the PHN centers to obtain additional information or to make a referral. If your patient approaches you about participation in a clinical trial, you may find useful information in our document: Is a Clinical Study Right for Your Patient?

Locate a Site near You

The Pediatric Heart Network (PHN) has clinical centers in the US and in Canada. These main clinical centers enroll patients into all of the current studies. Certain studies require more subjects than are available at the main PHN centers. Additional sites may selected and trained to participate in the study. You may find a site located near to you. (See Participating Sites)

If you do not see a clinical center near you, be aware that a number of clinical centers in the PHN are referral centers that see patients from significant distances. These centers have developed strategies for enrolling long-distance patients into studies while adhering to a well-defined protocol. Some PHN studies have provisions built into the protocol to accommodate families living a distance from the PHN site.

Contact the Principal Investigator  or Research Coordinator

If you would like to discuss a particular study with a PHN investigator or if you would like to refer a patient for consideration for a PHN Study, click on this link (Participating Sites) for contact information. If your patient appears to meet the study requirements, the PI or Study Coordinator will consult with you regarding the best time and method to talk with your patient.

Patients referred to a PHN study continue to be managed by their primary cardiologist. The PHN research team is committed to communicating frequently with the primary cardiologist in order to coordinate tests or visits, to ascertain adverse events, and to share information about the patient’s health and care. Unblinded results from all study tests and other pertinent information will be given to the primary cardiologist.

Frequent contact with the families is made via the internet, phone or through the primary cardiologist. Discuss with the study team how this can best be handled for your patient. Our study nurses can often serve as additional resources to the families and our study investigators are available to answer questions that you or your patient may have.