How patients and families can help build an understanding of HCM care, awareness, and advocacy

Clinical Trials:

Innovation has come to HCM through new therapeutic options under investigation. Several trials are open, and several more are planned for later this year or early 2025. 

So, what is a Clinical Trial?

A Clinical trial is a research study that tests a medicine, surgical, or behavioral treatment to see if it works.  With the data from these trials, researchers determine if a new treatment is safe and effective in people.  Research and its results help set the foundation for new research. When a medication is proven safe and effective for a group of patients, it may be considered for study in another population. By volunteering for a trial, we learn more about HCM and how we can live better with it, and maybe someday eradicate it all together.

Many scientific advances come from passionate patients and people like you participating in trials like the ones we have coming up.  

How do I learn more about clinical trial opportunities?

1. HCMA has made it easy through our online tool  https://bit.ly/46v4d5D – Antidote, a health company platform for recruiting HCM patients that searches HCM trials in a friendly format.  The source of their data is Clinicaltrials.gov. 
2. clinicaltrials.gov –  is a website listing clinical research studies and information about their results.
3. Call the office (973) 983-7429 or email Linda@4hcm.org to learn more.

Other types of engagements are available. 

Sponsor-initiated Market Research Engagement: 

The HCMA has several opportunities annually for unique engagements to share the patient and family member’s lived experience to help improve outreach and marketing efforts. Sometimes, these engagements are disease awareness-focused and other times, they may provide “branded” marketing feedback on an approved class of therapeutics. 

So, what is a Sponsor-Initiated Market Research Engagement?

The sponsor-initiated marketing research engagement aims to gather and deeply understand information regarding HCM, its patients, caregivers, and behaviors. They are often interview-style (question-and-answer) phone conversations.   These engagements tend to be smaller in number with a quick turnaround.  For example, we may have 20 positions and must complete the activity in 4 weeks.  Other times, the information may be collected in a survey or a focus group meeting.  Most engagements will compensate you for your time. These opportunities typically include payment for service. To ensure we know you are interested in this type of engagement visit; https://www.surveymonkey.com/r/5YPBF7B

 Advisory board recruitment

So what is an Advisory board and what are their responsibilities?

An advisory board has several key responsibilities contributing to an organization’s success. Their primary role is to provide strategic advice and guidance to the management team. They use their professional or personal expertise and/or industry knowledge to help the organization make informed decisions and develop effective strategies.