HD research news - medical research into treatment & prevention

Report of a debate about neural transplantation

April 2001

Some members of the HDA will have heard radio programmes and read newspaper articles about a few patients experiencing complications following neural transplantation for Parkinson’s disease. The debate in the media came after an American study of neural transplantation for Parkinson’s disease was published in the New England Journal of Medicine March 8^th 2001. This report aims to give more details about the debate.

Is this relevant for Huntington’s disease?

It could be. A group of researchers (called the UK NEST group) in this country are carefully studying the potential value of neural transplantation for Huntington’s disease. But the technique used in this UK NEST study is different from the one used in the US study and has caused no ill effect in other centres. These other centres are in France (Creteil), Sweden (Lund) and other US centres (Tampa) and have employed the same approach as that adopted in the UK study. These other centres have mainly concentrated on transplanting patients with Parkinson’s disease but both the Tampa and Creteil teams have grafted some patients with Huntington’s disease without complications. The UK NEST group’s work is at still at a very early stage of development and it is essential that this careful study be completed before the treatment is considered for widespread use.

Is there oversight of the research programme?

Yes. Firstly, the research group is responsible to their local research ethics committee and has to report any problems to them. Secondly, the Medical Research Council, which is sponsoring the study, has set up a Trial Steering Committee (TSC). This consists of 5 people who are independent of the study. The members of the TSC meet with the researchers at least once a year to learn how the study is progressing. If the TSC have serious concerns about the study they can vote to stop the research.

What did the TSC do when concerns about the Parkinson’s operation were raised?

The members of the TSC met with the researchers within a few days of publication of the US study. The operation for Parkinson’s disease was discussed in detail. A key point was the operation used in that particular study of Parkinson’s disease patients; it was very different from that being used for Huntington’s disease and for other Parkinson’s disease patients. Complications have not been reported in other centres grafting patients with Parkinson’s disease using the operation similar to the one being done in the UK for Huntington’s disease.

What was the outcome of the TSC meeting?

The TSC resolved that:

The study of the operation for Huntington’s disease should continue.
All the patients and their relatives who are participating in the study have been sent a letter from the researchers explaining the current debate.
The decision of the committee should be communicated widely hence this report in the newsletter and on the HDA web site.
The Trial Steering Committee will meet again in a few weeks time for the regular meeting, which had been arranged earlier in the year.

Can anyone have the operation which is being considered?

No. The operation is still at a very early stage of development and cannot be widely used until the results of this study are known.

Will more information be available?

The researchers will be asked to write a separate report about their study, which can be published in the newsletter but at this stage detailed results cannot be given.

Oliver W J Quarrell, Member of the Executive Council of the HDA, Member of the Trial Steering Committee