NIH Research: Children Research Volunteers Receive Care and Help Advance Knowledge NIH MedlinePlus the Magazine
Children research volunteers receive care and help advance knowledge
If one smile can light up a room, the smiles of many can light up a whole building. Such could be said of the pediatric patients at the National Institutes of Health (NIH) Clinical Center.The NIH Clinical Center has a long history of treating the brave children who participate in clinical research to improve outcomes and advance the knowledge of disease. NIH researchers were responsible for the first chemotherapy cure for childhood leukemia and Hodgkin’s disease and have made strides in the detection and treatments of pediatric AIDS. Progress continues in rare diseases, such as progeria, and behavioral conditions, including autism.
The hospital won the 2011 Lasker~Bloomberg Award for Public Service for serving as a model institution that has transformed scientific advances into innovative therapies and provided high-quality care to patients while training future clinician-scientists.
“More children with rare, orphan diseases are seen at the NIH Clinical Center than at any other place in the world,” said Dr. John I. Gallin, NIH Clinical Center director.
Research volunteers who enroll in the clinical studies at the NIH Clinical Center range from first-in-human trial participants hoping for a cure to healthy volunteers who provide comparison for studying disease. Children fall into both categories, too.
The hospital has a 22-bed inpatient unit and a 15-station day hospital where outpatients receive treatment. A dedicated outpatient clinic welcomes children and young adults who are visiting for short-term appointments.
“More children with rare, orphan diseases are seen at the NIH Clinical Center than at any other place in the world,” said Dr. John I. Gallin, NIH Clinical Center director.While visiting the NIH Clinical Center, children are treated to a world-class staff of specialists and support services. A dedicated pediatric consult service assists investigators in the care of this unique patient population. The Recreation Therapy Section addresses physical, cognitive, social and emotional domains. The NIH School helps children keep up with their studies in a classroom setting or at the bedside.
One of the greatest resources at the NIH for pediatric patients is The Children’s Inn, a home environment only steps away from the hospital that houses more than 1,500 patients and their family members each year. The staff and volunteers create a caring environment where kids can be kids.
“The Inn has had a huge impact on the environment for children participating in clinical research,” said Dr. Gallin, who serves on the Inn’s Board of Directors as clinical advisor.“It is a tremendous resource.”
For information on kids participating in research, visit clinicalcenter.nih.gov/kidsinresearch.
Channing’s Story: Surviving at 3; Thriving at 9
Before she was 1, Channing O’Halloran was diagnosed with cystinosis, a hereditary illness found in fewer than 1,000 children worldwide. It used to be a death sentence for kids before they reached age 10. But thanks to her mother, who wouldn’t accept that scenario, at age 3 Channing came under the care of NIH researcher Dr. William Gahl, a leader in the treatment of cystinosis. The family stayed at The Children’s Inn while he developed the therapy that today enables Channing, now a confident 9-year old, to do well at school, take ballet, model, and shine on stage. At a recent school chorus performance, Channing noticed a boy wasn’t wearing his chorus dress clothes. When the boy confided to Channing that he had “stage fright,” she advised, “I love being on stage. You should stand by me, and maybe you’ll get some braveness.”Although she is still a little girl in danger, Channing takes her medicine every six hours, even waking herself at 1:30 every morning to take her pill. Says Dr. Gahl, “A researcher needs to have access to the people like Channing who have the illness. Here at NIH, the children can come for free, stay for free, and be treated for free. There’s nothing to compare to that anywhere else.”