Those who have signed on at HDTrials.org now number
almost 1000. But we will need many more than 1000 people to
complete clinical trials now in progress and those that will be
coming. Joining HDTrials.org, learning about clinical trials, and
spreading the news are all important and positive steps forward -
but they will accomplish little if we don't take the next
steps to maximize participation.
So Far From HDTrials.org: Three e-mail notifications have gone out:
- Mito-HD is a one-day clinical study offered at three sites, to learn more about energy dysfunction in Huntington's. Investigators hope the results could lead to better and faster tests to check whether a drug is working to improve energy dysfunction in HD.
- HART is a three-month Phase 2
(Safety) clinical trial for the drug ACR-16. This trial is taking
place in 25 sites across the U.S. and Canada. A Phase 3
(efficacy) trial for ACR-16 is simultaneously taking place in
Europe. The European trial is now fully enrolled. But we need
many more to complete enrollment for the trial in North America
COHORT is an ongoing multi-year
clinical study of Huntington's families that collects
physical symptom data and blood on a yearly basis, toward
identifying biomarkers and other information to improve and
speed clinical trials of HD therapies.
Joining HDTrials.org, learning about clinical trials, and spreading the news are all important first steps forward - but we will need to do more to maximize participation.
What is Clinical Research Participation? Participation comes in many forms: First and foremost is that of Huntington's individuals who actively take part in clinical trials or studies. But what if you can't directly participate because you are an HD person who doesn't fit the study criteria, or are a family member or friend? You can still be a vitally important part of the clinical trial process - by easing the way for anothers direct participation. This support function is particularly important for HD and will be needed to maximize the numbers of HD people enrolled in clinical trials.
Why We Need Community Support for Clinical Trials: We need community support because it takes time and effort to participate in clinical trials for Huntington's. In addition to the direct Huntington's participant, many studies require a family member or partner at least for a portion of the visits. In these cases, the time and effort of two people are required to fill one clinical trial spot. When Huntington's families are already stressed, the time and effort needed for clinical trials can feel overwhelming. This is a huge barrier to participation. How can we as the extended HD family help to overcome this barrier? We can work to lighten the load for those who can directly participate in clinical trials, thereby maximizing the number of participants. Such support can bring communities together in working positively to bring treatments for Huntington's disease.
How to Build a Network of Community Support: As the first step, we need to identify and empower leaders within our HDSA chapters, existing community support groups, and extended families to focus on clinical trials. Leaders can then organize others to identify the needs and devise plans to help those who can directly participate in trials. For example, support people can:.
- Increase clinical trial awareness and knowledge
- Give encouragement without coercion
- Provide transportation to and from visits
- Assist with child care
- Provide food
- Recommend lodging for long-distance travelers
- Show gratitude
There are many ways to help the clinical trial effort. We can be sure that this effort for clinical trials is important for everyone - because Huntington's treatments will come more quickly if we pull together with the strength of the entire community.