Visit to Netherlands

Sunday and Monday I have met with a series of physicians here in the Netherlands, talking about how VHL is managed here, and learning from their experiences.

In the Netherlands there are two primary centers where the clinical geneticists see people with VHL and refer them to other physicians at these two medical centers who are familiar with VHL. They use a screening protocol quite similar to the one in the Handbook, but they also use a F-18 PET scan to evaluate the amount of HIF accumulated at points in the body. This is new to me. I have asked them to provide us with an article for the newsletter about this scan.

Dr. Cornelius Lips in Utrecht is working with a committee to develop a standard for what constitutes good care for someone with VHL. Using this protocol, they are hoping to standardize care for all Dutch citizens, and make sure that people are getting the care they need.

There are seven academic medical centers in the Netherlands. All of them have fine physicians and surgeons, and the technology needed to provide care for VHL. However, as everywhere, they differ in the level of experience and expertise they have with VHL per se. The national health system is hoping that by having a protocol for what constitutes good care for VHL they will be able to standardize care for this rare disease throughout the country.

There is a research project in Utrecht where they are evaluating the entire genome of cancer patients, especially those with hereditary cancer syndromes like VHL -- sequencing the entire genome. This generates a mountain of data, not all of which we understand how to analyze at this point in time. They are hoping that by banking this information, updating it at points of progression of the disease in future, and going back to analyze it as the technology improves, that we might be able to learn more about how genes change as one advanced through the process.

They have already identified some characteristics that are helpful in identifying people in the general population who should be investigated further for kidney cancer. When this paper is published, we will report it in the newsletter.

Exciting stuff! Tomorrow morning I leave on the train for Germany.

Best wishes,
Joyce