A couple weeks ago, I was in China, to visit with Dr. Ruifang Sui, a Foundation-funded clinician-researcher at the Peking Union Medical College Hospital in Beijing. During my time there, I felt like I had never left the United States. Don’t get me wrong — there’s no mistaking Beijing for Baltimore (the location of our national office) or Mandarin for English. But when it comes to retinal degenerations, we and the Chinese have a lot in common.
Namely, the Chinese have many of the same retinal diseases that affect us, including retinitis pigmentosa (RP), Leber congenital amaurosis (LCA) and macular degeneration. They also have the same interest in finding vision-saving treatments and cures.
What China doesn’t have just yet is the same breadth of knowledge about retinal degenerations as the West. But that is changing quickly, thanks to the growing number of experts like Dr. Sui. Trained by some of the world’s best retinal researchers, including Dr. Ed Stone, of the University of Iowa, and scientists from the National Eye Institute, Dr. Sui is doing an outstanding job diagnosing patients and genetically characterizing their conditions. I was particularly impressed with her caring attitude and great bedside manner.
I was also excited to meet Mr. Zhong Hu, the father of one of her patients, who is interested in starting an FFB-like organization in China. With 400,000 people affected by RP alone, (quadruple the number with RP in the U.S.) and increasing personal wealth, China offers great potential as a resource for driving research to find vision-saving treatments and cures.
It’s research that could benefit people around the world with retinal diseases. I don’t expect to see a Beijing Dining in the Dark fundraiser next year, but there is an enormous opportunity to fund new research.
While China is still at an early stage in retinal science, the country has made major strides in genetic screening and discovery. During my visit, I was joined by Dr. Stephen Daiger, a Foundation-funded genetic researcher from the University of Texas Health Science Center, for a meeting with representatives from the Beijing Genomics Institute (BGI), a group participating in a number of international collaborations.
We were impressed by the sheer power of BGI’s screening technology and saw potential for a future partnership. In fact, the institute was a collaborator for a Foundation-funded project that identified defects in the gene NMNAT1 as a cause of LCA. Dr. John Chiang, director of the Casey Eye Institute Molecular Diagnostic Laboratory in Oregon, co-led that effort and works with BGI on other retina-related genetics projects.
It is important to note that the Chinese clinical research community is also collaborating with the U.S. Food and Drug Administration to bolster its regulatory oversight of human studies. As in many other countries, unregulated medical tourism does exist in China, and, at the moment, you need to be wary of bold claims for sight-saving cures made by companies there.
Overall, my trip to China was productive, and I felt proud to be representing the world’s leader in funding retinal research. At the same time, I recognized that we don’t want to fight the fight alone. It is imperative that we establish and build international collaborations such as those with Chinese institutions, and I am pleased with the steps we’ve taken thus far. By working together, we’re getting to our sight-saving goal much quicker.
Pictured above: Huajin Li and Fei Xu, two of Dr. Sui’s students, standing in front of Peking Union Medical College Hospital. Photograph by Dr. Steve Rose.