Medical Professional Publications

Research Corner

By Terri Johnson, RN
We are so excited to have the opportunity to participate in numerous clinical trials at Nationwide Children’s Hospital. We are so thankful to have so many wonderful patients that are willing to participate in research. Without the commitment from our patients no clinical trials could be done. We thought it was time to share with all of you the types of research being done here at your CF center.
This type of research is changing the way an abnormal CFTR protein functions in Cystic Fibrosis. Most of these studies are targeted at specific genotypes.
The names of the studies we are participating in includes:
  • Vertex 809-105-ORKAMBI-which has now been approved for delF508/delF508
  • Vertex 661-110 with Ivacaftor-for delF508/delF508-12yo and over
  • QBW251-delF508/delF508-18 yo and over
  • PROQR-010-delF508/delF508-18 yo and over
  • SNO 6-combined with Orkambi for delF508/delF508 and 18 yo over
This type of research is to provide hydration to the airways which patients with CF do not make naturally.
  • SHIP-for patients 3-6yo to assess how effective hypersal is in this age group
  • Mannitol-for patients 18yo and over-it is a powder inhalation that patients do twice a day to provide hydration to the airways
  • Aerovanc inhalation- for 12yo and over-this is looking at a new way to take inhaled vancomycin with the PARI e-flow machine
  • Optimize-looking at all ages with first colonization of Pseudomonas growth using TOBI and Zithromax
  • Galium-for patients 18 yo and over- using an IV med to treat infection
  • EPIC-this is a Longitudinal Registry study looking at ongoing clinical information on patients of all ages
  • GOAL –this is following patients on Kalydeco to monitor long term outcomes
  • Prospect-this is following patients on Orkambi to monitor long term outcomes
  • AZLI 5 year Registry study monitoring susceptibility of Aztreonam to Ps Aeruginosa isolates from sputum
  • Orkambi-all ages at our site-looking at different measurements to show how well Orkambi is working over a 6-12 month period
  • Alcresta-ages 12-80 yo-looking at a new digestive cartridge to assist with digestion of tube feeds
  • Comparing the standard Oral Glucose Tolerance Test to a Complex Carbohydrate Meal
This is some of what is going on here at this time. We are always getting requests and participating in more and more research. If you have questions about research or wonder if you or your child or spouse is eligible, please feel free to contact me at (614) 722-4766.

myChildren’s mobile app

iPhone and Android.

Download Today! »

Nationwide Children's Hospital
700 Children's Drive Columbus, Ohio 43205 614.722.2000