Question 1

How do I register for the Heart Hive?

Accepted Answer

You are eligible if you meet any one of these criteria:
 -have a diagnosis of cardiomyopathy or myocarditis -have a family history of cardiomyopathy -have had genetic testing revealing that you have an inherited risk for cardiomyopathy

Or you can register if you do not have heart disease and would like to be in our comparison group (check out the Participants without heart disease FAQ section for more details)

Head to our registration page where you can set up an account and provide some basic information about yourself.

Question 2

I've registered, what next?"

Accepted Answer

Once you've registered an account - please log in to see if you have any available tasks in the "My Tasks" section.     Every study conducted though the Heart Hive will have it's own consent process, explaining the study's purpose, what it will involve and any risks that might be involved. A completed version will be emailed to you and available for download at any time via the portal.    Depending on the study, taking part will involve completing surevys, and some will involve genetic analysis via DNA collected from saliva kits mailed out to participants.

Question 3

I've changed my mind about taking part

Accepted Answer

If you wish to withdraw from any study, please log in to the Heart Hive and complete the withdraw form.    If you haven't consented to any studies yet but would like to delete your account, please contact us

Question 4

Can I edit my account details?

Accepted Answer

Yes, if you've noticed something is wrong in your registration details, log in to your account and click on the purple icon in the top right of the page. Click on profile and edit any section that you need to.     Any dates can be entered in the format 25 Dec 2000 or 12/25/2000 (US-format mm/dd/yy).

Question 5

I've forgotten my password, how can I access my account?"

Accepted Answer

You can reset your password here and recieve a link to the email address you registered with.

Please check your junk mail folders.

Question 6

Can I register if I dont have cardiomyopathy but a member of my family does?

Accepted Answer

Yes, anyone with a family history of cardiomyopathy can register with the Heart Hive   On the registration form select: 
Healthy Volunteer - No Diagnosed with cardiomyopathy? - No Family history of cardiomyopathy -Yes

Question 7

Can I register if i don't have heart disease?

Accepted Answer

Yes, if you don't have heart disease you can join the Heart Hive as one of our comparison group for our COVID-19 Study

The Heart Hive is primarily a platform for people with cardiomyopathy & those with a family history of cardiomyopathy to take part in research. We expect this will be a one-off opportunity for people without heart disease to take part in the Heart Hive but we may invite you to participate in future studies where a comparison group is needed.

Question 8

Can I register if I have high blood pressure or diabetes?

Accepted Answer

Yes, we're accepting participants with high blood pressure or diabetes.    You can sign up and take part in our comparison group by registering and selecting the following options:   Healthy Volunteer - Yes Diagnosed with cardiomyopathy? - No

Question 9

Which browsers are compatible with the Heart Hive?

Accepted Answer

The Heart Hive is not currently supported on Internet Explorer.

Question 10

I'm having trouble entering my date of birth on the registration page

Accepted Answer

There is a known bug with the calender in the Heart Hive portal. A fix should be rolled out soon by our developers.   If you have trouble using the calender, try manually entering the date in the following format   "1 Jan 1990", "25 Mar 1975", "17 Nov 2000"   Contact the Heart Hive team if you are having any difficulty

Question 11

The consent form is not accepting my signature

Accepted Answer

This may be because you're using a non-compatible internet browser. Please try with a different browser (e.g. Firefox, Chrome, Safari)

Question 12

How can I find out more about the research studies hosted on the Heart Hive?

Accepted Answer

If you register for the Heart Hive and are eligible for any studies, you will find a section on the landing page called Useful Documents containing full details of any study that might be suitable for you to sign up to.

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