Children’s Doctor News and Updates: Spring 2018

CHOP Cardiac Center care now in Allentown

Children’s Hospital has joined forces with physicians and staff of Children’s Heart Center of Northeastern Pennsylvania to offer services to patients in the Allentown area through the CHOP Cardiac Center. Heart Center cardiologists Louis Hansrote, MD, Robert Palermo, DO, and Ruchi Gupta, MD, remain on staff.

“By joining CHOP, we are able to work closely with providers from CHOP’s Main Campus to give our patients easier access to the latest breakthroughs in comprehensive cardiac care,” Hansrote says.

The new cardiology practice site is located at 1605 N. Cedar Crest Blvd., Suites 117 and 119, Allentown, PA 18104. To make a referral, call 267-426-9600. For outpatient appointments in Allentown, call 610-437-6687.

Hearing loss is common after infant heart surgery

Children who have heart surgery as infants have an approximately 20 times higher rate of hearing loss by age 4 than typical children, according to a CHOP research study that analyzed medical records of 348 preschoolers who survived cardiac surgery.

Researchers, led by Nancy B. Burnham, RN, MSN, CRNP, found hearing loss in about 21% of the cardiac patients, leading to a recommendation that children who undergo heart surgery have their hearing evaluated by age 24 to 30 months, to increase their chances of receiving timely interventions. This study, which appeared in the Journal of Pediatrics, is the first to focus on hearing loss and its impact on neurodevelopment in this population.

Read more about the study.

Study highlights unknowns in supplements to treat mitochondrial disease

There is a great need to rigorously evaluate the safety and efficacy of the variety of the largely unregulated vitamins and supplements children with mitochondrial disease often take in the absence of validated, effective drug treatments.

That was the conclusion of a new analysis of nutritional interventions for mitochondrial disorders published in the Annual Review of Pathology: Mechanisms of Disease and co-authored by Marni J. Falk, MD, Executive Director of Mitochondrial Medicine, a Frontier Program at CHOP, and Zarazuela Zolkipli-Cunningham, MBChBD, a neuromuscular specialist. “There’s a large gap between the compounds that patients are routinely using and the degree to which those compounds have been scientifically tested,” Zolkipli-Cunningham says. For example, there is no evidence the OTC supplement coenzyme Q10 lives up to the claims it’s an antioxidant that reduces biological damage from reactive oxidant molecules.

Read more about the study.

CHOP research leads to second FDA-approved gene therapy

In December, the U.S. Food and Drug Administration (FDA) approved an innovative gene therapy, developed initially at Children’s Hospital, for the treatment of biallelic RPE65 mutation-associated retinal dystrophy. The therapy, known as LUXTURNA™ (voretigene neparvovec-rzyl), is a one-time gene therapy product given by injection.

Its roots are in 10-plus years of research at CHOP that was continued at Spark Therapeutics, a CHOP spin off biotechnology company led by former CHOP researcher Katherine A. High, MD.

LUXTURNA’s approval comes on the heels of the FDA’s approval in August 2017 of Kymriah™ (tisagenlecleucel, formerly CTL019), a personalized cellular therapy developed by Novartis, the University of Pennsylvania and CHOP for the treatment of patients up to 25 years of age with relapsed or refractory B-cell acute lymphoblastic leukemia.

‘CHOP speaks your language’ connects families to interpreters from home

To enhance access for limited English proficient (LEP) families, CHOP Language Services now offers telephonic interpreters to patient families placing calls from home to Children’s Hospital providers. The service, called CHOP Speaks Your Language, gives families one phone number to contact Children’s Hospital to be connected to an interpreter in 9 languages: Spanish, Arabic, Mandarin and Cantonese, Vietnamese, Portuguese, French, Russian, and Nepali.

Families who would like an interpreter on the line before they place a call to CHOP may dial 877-463-7907 and follow the menu prompt in their preferred language. They will be connected directly to an interpreter for their selected language without having to wait for an operator, and this interpreter will connect them to the CHOP phone number of their choice and then stay on the line to interpret the call.

If you refer an LEP family to CHOP, please pass along the CHOP Speaks Your Language number.

4 new clinical pathways available to all

CHOP’s Office of Clinical Quality Improvement has posted 4 new clinical pathways. Pathways for Kawasaki disease, meningitis, exchange transfusion, and transition to adult care are available — along with more than 110 others — at chop.edu/pathways.