Poland was one of the first European nations to join Enroll-HD. Grzegorz Witkowski, MD, PhD, a physician at the Institute of Psychiatry and Neurology in Warsaw, is the Polish language area coordinator (LanCo) for the European Huntington’s Disease Network, which means he acts as an official representative, translator and point person for the operations of Enroll-HD in that country.
How did you get involved in treating people with HD?
In about 2007, I started to get involved in management of patients with HD in our outpatient clinic. My tutor was a doctor who worked with HD patients for about 20 years, including genetic diagnosis.
HD was always very special for me, because it was the first disease I had very close contact with. The burden is so high, not only for patients but for families, and I felt a great need to work both with these patients and these families. At the time there was no special medical support for HD patients in Poland. That is to say, it was all available in our hospital but there were no clear ways of directing patients to all these specialists. I discussed the situation with other specialists such as psychiatrists and physiotherapists who work in the hospital, and it became possible to refer our patients to these specialists if they needed such help.
Who else is involved in HD in Poland?
Another important part of our work is to cooperate closely with lay associations such as the Polish Huntington’s Association, which does a really great job in Poland. I can’t imagine orking without cooperation from them. It organizes physiotherapy for patients, social organizations for families, and meetings two to three times a year in which physicians participate. I enjoy these regular meetings, because we can meet a lot of patients and families, and understand their problems. It’s very useful in everyday clinical work.
What was your experience with REGISTRY, the study that came before Enroll-HD in Europe?
It was a great help for us. In REGISTRY, as in Enroll-HD, patients should visit at least once a year. We have a lot of patients and the structure of the study database helps us to plan visits. Enroll-HD is a whole world study so we can compare how our patients are doing with those in the UK or France or the US. We can compare disease progression, or see if the response to drugs is similar.
How is Enroll-HD going in Poland?
In REGISTRY, we had about 1,000 participants in total. We don’t yet have quite that number for Enroll-HD, but expect to reach it in three or four months. We expect there are about 3,000 to 4,000 with HD in the whole of Poland, so there’s still a lot to do. People say that HD is rare, but it’s not especially rare!
How do you explain the study to people considering volunteering?
It is very important to clearly explain that Enroll-HD is not a drug study. We don’t provide any special treatment, but we will take care of volunteers since we’re knowledgeable about HD. They can always contact us when they need to. The data we receive from this study are serving us to understand the progression of the disease. So they’re participating in a huge project. They’re members of a huge community that works to better understand the disease.
This story was originally published in the Spring 2015 issue of Enroll!