More important, I met yesterday with Dr. Kan Gong of the Department of Urology of the First Hospital of Peking University, and his colleagues in the urology department. Dr. Gong was one of those who presented a paper and a poster in Kochi, and he had invited me to meet with his team in Beijing during my holiday visit here.

He showed me around the hospital, which is very beautiful and new, only two years old. At the entrance there is a heat detector, monitoring the people walking through, to detect any people with high temperatures before they get in the door. This is to protect everyone in the hospital from SARS. They have a separate ward for people with SARS, in another building.

The groups presented their research to me, each discussing his own research. They are all studying some aspect of VHL, mostly changes in the VHL gene in sporadic tumors rather than focusing on the VHL syndrome. Dr. Liu in particular has a collection of 89 kidney cancer tumors, and has found changes in the VHL gene in 55% of his samples. He has also collected non-tumor tissue from these same patients for comparison, and only one has VHL syndrome.

They are doing some very interesting work on HIF-1-alpha and VEGF. They have published papers in Chinese. Through the Kochi meeting they will be connecting with other researchers doing similar work in other parts of the world. Dr. Gong was very enthusiastic about the contacts he made in Kochi.

I gave the presentation I had prepared for Guangzhou and we talked about VHL in China. Based on the population, one would expect that there are about 30,000 people with VHL in China, but there is currently a very low rate of diagnosis. We talked about strategies that have been used in other countries to raise the rate of diagnosis over the past ten years. This team has currently asked doctors throughout China to refer to them all cases diagnosed with VHL. I said that it has been helpful in similar situations to ask to see all patients with RCC tumors who are under the age of 40, of who have tumors on both kidneys, and leave it to their team to make the actual diagnosis. In this way they are likely to find not only VHL but also other hereditary causes of kidney cancer.

Since China does have a central tumor registry and a centralized medical records system, we talked about what has been done in France with a similar medical system. I shared with them that in France Dr. Richard reviewed all the cases of hemangioblastoma in the previous 20 years, and found that 20% of those were in fact undiagnosed VHL. In a similar way, he did a retrospective study of pheochromocytoma and found a significant number of undiagnosed cases of VHL.

They were very interested in the discussion, and I think that they will be very instrumental in raising the rate of diagnosis of VHL in China. We discussed the experience of Dr. Rocha in Brazil, where he found 28 families with VHL in only five years, and that half of the mutation types found in Brazil were new to the VHL database. We are very interested to see whether new mutation types will also be found in China.

Dr. Gong was also very impressed with the family interaction in Japan, and hopes to help create a similar family alliance in China. I said that we would be happy to share information and interact with the group, and explained how we work with other international affiliate groups. It takes a certain amount of energy from the families as well, so we will all look for a few good family members who can help to bridge the language gap and link China with the resources available in English and other languages.

Following the presentation they invited me to join them for dinner, along with Dr. Gong's wife, an anesthesiologist from the same hospital. Dr. Liu is sitting beside her.

I have made contact with one VHL family here as well, and have connected them with Dr. Gong.

Best regards,
Joyce

Read the other reports from Kochi, Japan and Guangzhou, China.

Dr. Gong (far right)

Joyce Graff in group picture

climbing stairs at the great wall

having dinner