Recruiting has begun for 2CARE, a large PHASE 3 trial testing Coenzyme Q-10 in Huntington's disease. At its conclusion we will hopefully learn a definitive answer whether high doses of this supplement can slow the progression of Huntington's. The Huntington Study Group is recruiting for more than 600 participants for this trial that is slated to last as long as five years, but will be stopped earlier if benefit is shown during a shorter time.

On a less positive front, several recent trials of Coenzyme Q-10 for Parkinson's have not confirmed the benefit that an earlier trial had suggested . .

With his permission, I gratefully post an interview by my good friend Gene Veritas with Dr. C. Frank Bennett, Senior Vice President of Research at Isis Pharmaceutical. If all goes as planned, Dr. Bennett predicts 2010 as the date for first phase human clinical trials for Huntington's.

It sounds possible -- I can hope he's right.

Updated May 8, 2008

The European Huntington Disease Network (EHDN) has begun recruiting for a PHASE 3 study of ACR-16 in Europe that will involve about 420 patients. This clinical trial will test 2 different dosages of the drug and last for 6 months. We are more than a bit behind. Start dates for the U.S. counterpart, an earlier PHASE 2 trial that will last for 3 months have not been announced.

EHDN science writer Dr. Diana Raffelsbauer's interview with Dr. Arvid Carlsson, the nobel laureate who discovered the molecule is presented in EHDN's inaugural newsletter.

Dimebon is looking good for Alzheimer's (AD). A 2nd AD trial (this one a PHASE 3) confirmed benefit seen in an earlier PHASE 2 trial. Benefits in memory, thinking, and behavior persisted during the year of treatment; in fact 81% of of AD participants were better than when they started the study. Based on these results Medivation is planning a larger PHASE 3 trial later this year. If results are positive, the company aims to start the FDA approval process in 2010 and the drug could move to patients shortly after. What about Huntington's; why was this trial slow to recruit?

NBC correspondent Charles Sabine was an important highlight from the February 2008 CHDI conference , setting the tone for this meeting with his powerful opening presentation. Mr. Sabine-- who is known for his decades of news coverage in countries torn apart by war and disaster -- came out of the Huntington's closet. He spoke of his family's experience with the disease, and later about his own gene positive test. In his presentation he first offered heartfelt gratitude to all those who work for Huntington's; but he had other messages for CHDI and the assembled crowd: His was an eloquent plea to give hope and dignity to all families who sufffer from Huntington's. His video presentation from the HSDA website is linked below.

CHDI Inc. will be hosting the 3rd annual Huntington Disease Therapeutics Conference on February 4-7 in Palm Springs, California. Though they have have graciously extended an invitiation to Huntington families in the local area, this conference is quite technical, fast-paced, and intended mainly for researchers and drug company officials. If you would like to come, please contact Jerry Turner at This email address is being protected from spambots. You need JavaScript enabled to view it. so that CHDI can expect you as a visitor. The final day will be more relevant for Huntington families.

Author Ricki Lewis has published a new book that has Huntington's at its center. Dr. Lewis is a geneticist and a science writer for CHDI who has many connections to the HD community. Though the book is fiction, it is based on her special and caring connection to a real Huntington's patient.

The Huntington Study Group Annual Meeting for clinical trials took place on the days preceding the symposium. Dr. Marsha Miller has posted an excellent summary of the concluding symposium events on the HDSA website, so my focus is on the HSG meetings that led up to the symposium, and my general impressions of the whole process.

Just a generation ago, Huntington's was the elephant in the closet. But not so this generation -- stories of HD are everywhere, in newspapers and on television. Prominent among these media stories are Katie Moser's eloquent and personal story on the front page of the Sunday New York Times, and a fictional story on Fox TV's House M.D. In both of these narratives, and in the public response, the focus has been on gene testing for the at risk population. In this article, Dr. Goodman wonders how this public debate affects those who must make very private and painful decisions.

As a physician caring for Huntington's disease (HD) patients, I am often asked about supplements that have shown benefit in animal models of HD. Other HD patients use these supplements without guidance or supervision by a doctor. And even when the doctor is aware of supplement use, it is difficult to monitor the effect. How would we know they are helping? In an effort to address this situation Huntington's Disease Drug Works (HDDW) was established to follow the course of 30 people taking supplements. Now at the three-year mark, we are pleased to share results. A similar summary was reported in the HDSA November edition of The Marker.