The Hydrops Center of Excellence will be run through the UCSF Fetal Treatment Center, which is a well-established center providing comprehensive care for complex birth defects and was the birthplace of fetal surgery. The Center will be composed of a multidisciplinary group of experts in perinatology, genetics and genomics, pediatric surgery, neonatology, bioethics, social work, and counseling services. Their medical experts will review the details of each case, interpret prenatal imaging, recommend diagnostic evaluations, and determine eligibility for clinical trials of novel in utero therapies. Services will be offered as telehealth consultations for families living at a distance from UCSF, or in person consultations for those able to travel to San Francisco.
Drs. Sparks and Norton founders of the Hydrops Center of Excellence at UCSF will run this program. Funds will be used for engagement of providers and patient populations through marketing materials, for example through creation of informational products about our Center such as interviews of our experts and patients who received care with us. Other funds will be used to develop educational materials for providers caring for hydropic pregnancies, to subsidize the cost of genomic testing for patients unable to obtain insurance coverage, to pay for additional experiments to understand the clinical implications of less well characterized genetic changes (such as in vitro or animal models), and to develop the bereavement program as discussed above.