How to Refer a Patient for a Study
Identify a Study
Study synopses are available on the website for all open current studies
. Each study has an overview of the study objectives, the inclusion/exclusion criteria and study endpoints. A parent/patient version of the document is available as well. All study brochures are downloadable for distribution. 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 Sites
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, Canada and the EU. You may find a site located near to you by viewing the PHN study site map (See PHN 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-distant 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 (PHN 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 during the study. Unblinded results from all study tests and other pertinent information will be given to the primary cardiologist. Discuss with the study team how best interact with you and your patient.