In the recent HDDW article "Lighting the Candle" of clinical trials for Huntington's, we placed emphasis on the work of HSG, CHDI and other sponsors. Of course they are all important, but in the end the most vital part of clinical trials belongs to the Huntington family community: It will be us who keep the flames alive.

Because no matter who lights the candle, even the best drug candidates, or the most improved clinical trial designs, or the perfect biomarkers -- all of these things will make no difference -- if we don't support and join clinical trials. Here's how to begin . .

How to Keep the Flame Burning

(1) The most important factor is awareness. Know what is happening by checking on the HDDW clinical trial section, or on other listed web links. If you sign up at a new source, HDTrials.org, you will be alerted by email of any new trial offered in your area.

Signing up at HDTrials.org will also let drug companies know where there is interest, making it more likely that trials will be offered in these geographic areas. The National Roster for Huntington's is another source that can alert you to clinical trials offered by the Huntington Study Group.

(2) Increase your knowledge about the "what and why" of clinical trials for Huntington's. Some pointers:

WHAT ARE HUNTINGTON CLINICAL TRIALS?

  • They are research studies utilizing human volunteers to answer specific disease questions or to test treatments.
  • Each is conducted according to a specific protocol. The protocol describes the type of patient that will be included, the schedules of tests and procedures, the drug and dosages that will be tested, the length of the study, and the type of outcome measures like motor, cognitive or behavioral function.

WHY DO CLINICAL STUDIES AND TRIALS?

  • Clinical studies help find ways to speed up clinical trials (for treatments). Understanding the natural course of the disease will allow development of biomarkers that can then be used in trials to test drugs. PREDICT-HD AND COHORT are examples in the U.S. TRACK HD is a similar trial offered in Europe and Canada.
  • To find out if supplements or available drugs are safe and effective treatments. Examples include CoQ-10 and creatine trials.
  • To find out if new experimental drugs are safe and effective. Dimebon is an example.

(3) Do your own research and ask questions about the trial that interests you most.

QUESTIONS TO ASK BEFORE ENROLLING IN A CLINICAL TRIAL

  • What is the main purpose of the study?
  • Does the study involve a placebo?
  • How will the treatment be given?
  • How long will the study last, and what will I be asked to do?
  • What has already been learned about the study treatment?
  • Is there any reimbursement for travel or childcare?
  • Will I be able to see my own doctor?
  • Will I be able to continue drugs or supplements that I am taking?
  • If the treatment works for me, can I keep using it after the study?
  • Can anyone find out that I'm participating in a clinical trial? How will my information be kept confidential?
  • Will I receive follow up care after the study is completed?
  • How long will the study last, and what will I be asked to do?
  • What has already been learned about the study treatment?

(4) Communicate your knowledge Let others -- extended families, support groups, and the "on-line" community -- know what you have learned. Most will appreciate the information.

(5) Encourage and help others participate. Form car-pools, baby-sitting services or whatever is needed to facilitate the participation of others.

Editor's comments: There can be no treatment advances in Huntington's without our participation in clinical trials. Already, several hundred clinical trial volunteers are needed for ongoing drug trials; and even larger numbers will be needed for those that are planned. The more efficiently we enroll every single participant for every trial, the more quickly we will have treatments for Huntington's families.

Remember, that together we have the power to speed treatments for Huntington's families.