My wife is Japanese but married to me (an American) and we live in the U.S. She arranged for a sabbatical year in Japan at her job and we (myself and two children) went with her. While we were there, it was discovered that our 10-year-old daughter has a form of scoliosis they call “idiopathic”. The Japanese doctors there seemed really on top of the treatment of this condition. Now that we are back in the U.S., I can’t help but wonder if our doctor here knows as much as the Spine Group in Japan. How can I determine whether she is getting the same kind of care here as she got in Japan?

Idiopathic scoliosis is not an uncommon problem. Many primary care physicians and orthopedic surgeons see children of all ages with this condition. Idiopathic means the cause is unknown. In other words, the curvature does not occur because there is a neuromuscular disease, bone deformities of the vertebrae, or other condition scoliosis might be associated with.

Efforts are being made by physicians around the world who treat children with idiopathic scoliosis to improve treatment. In fact, ten years ago, a group known as the Growing Spine Study Group (GSSG) was started in just such an effort to deal more effectively with early-onset scoliosis (scoliosis present before age six).

Since that time, 22 Spine Centers in seven countries have joined forces to collect data on childhood and adolescent scoliosis. One of those countries happens to be Japan. The United States is also one of the countries involved in this work. The group is made up of 36 specialized surgeons trained in the treatment of complex spinal deformities among the younger pediatric population (birth to age five).

The GSSG engages in comprehensive, multicenter, prospective research studies. They are committed to an international effort to perform and publish results from the highest quality research studies. Their current focus is on new techniques for spinal deformity surgery.

There is a second group called another group called the Harms Study Group that collects data on children with adolescent idiopathic scoliosis (AIS) (children ages 10 to 18 years old). The two groups are similar in that they collect data and information and compile it to looks for patterns, trends, and outcomes in treatment to guide treatment of this problem in all ages. Treatment approaches and surgical techniques with the best outcomes are the focus of these multicenter research studies.

You may want to look for a surgeon in your area who is treating children with idiopathic scoliosis and who is part of the work of one of these two research groups. The physician you saw in Japan may be a part of this type of research. He or she could possibly even refer you to someone in the U.S.

If there is no one in your area with connections to spine center or spine research, that doesn’t mean there isn’t an expert in the field where you live. Your primary care physician or pediatrician is the best one to recommend someone who can offer expertise at a local level.