Here is a list of our most frequently asked questions with answers.

What is the HDNA?

 

The Huntington’s Disease Network of Australia, or HDNA, is the name of a project conceived of by Professor Julie Stout of Monash University. The project began in 2020, funded by an Investigator grant to Julie from the National Health and Medical Research Council (NHMRC) of Australia. The NHMRC provides funding to high performing researchers so that new and important research opportunities and collaborations can be pursued. This helps to bring about greater understanding of, and improved treatments for, medical conditions affecting Australians. 

What is the Map-HD Registry?

 

The registry enables the first-ever collection of a uniform set of data from people affected by HD across Australia. The purpose of the Map-HD Registry is to enable research that fosters the best quality of life for all people in Australia affected by HD. 

Who can register for the Map-HD Registry?

 

You can register if any of the following apply to you: 

  • You have HD 
  • You have the expanded HD gene 
  • You have a family member with HD 
  • You help to take care of a person with HD 
  • You are registering on behalf of someone else (but only if you have their permission) 

 

Do I have to participate in the Map-HD Registry?

 

No. Participation in the Map-HD Registry is voluntary. The choice is yours. 

What is a PICF?

 

PICF stands for Participant Information and Consent Form.

The form contains detailed information for potential participants and a consent form to sign. You can view and download the PICF from the HDNA website hdna.com.au (located on the Map-HD Registry page). 

Which PICF should I complete?

 

That depends on who you are consenting for and registering: 

  • Adult providing own consent – for when you are consenting for yourself as the participant 
  • Parent/Legal Guardian consenting on behalf of a child – for when you are consenting on behalf of a child in your care i.e., a minor under the age of 18 years who has given their assent, i.e., they wish to be a part of the registry but due to their age are unable to consent for themselves 
  • Carer/Partner/Responsible Person consenting behalf of a participant – for when you are consenting on behalf of another adult as the participant, provided they want to participate but they are unable to provide consent themselves

If the person to be registered can understand what it means to be in the registry and is able to weigh information about being in the registry in making their decision to participate, use the form labelled Participant Information/Consent Form Adult providing own consent instead of this form. If they do not understand all of what it means to be in the registry or cannot use the information provided to make their own decision, use this form to consent on their behalf. 

What am I agreeing to by signing the consent form?

 

You are agreeing to voluntarily provide information about yourself, that will be shared in de-identified form, for research purposes aimed at improving the lives of all Australians affected by HD.  

There are 5 required consent items and 4 optional consent items. 

The optional consent items can be selected or deselected at any time should you change your mind. 

What does de-identified data mean?

 

Registry data will be shared in de-identified format for research purposes, meaning that no information will be shared that can identify you as an individual participant.

Why is there no signature block on the consent form?

 

The consent is provided within the secure portal of the registry. 

By typing in your name and date and then clicking “I consent” your electronic signature is recorded by the system. 

What is the difference between an account and a profile?

 

An account is for you to use to log on and gain access to the portal. Your account can be used to register more than one person. For example, you may register a person you care for, and you may also register yourself using one account accessed by you.  

A profile is built within the account by selecting the relevant PICF for the participant and answering the questions. 

Each person you register will have their own informed consent and their own participant profile in the registry.

Can I have more than one profile in my account?

 

Yes. Your account can be used to register more than one person. For example, you may register a person you care for, and you may also register yourself using one account accessed by you.  

Each person you register will have their own informed consent and their own participant profile in the registry. 

What are the benefits of participating?

 

Possible benefits include finding out about opportunities for accessing clinical services, research, treatments, and HD events. By participating you will contribute to broader knowledge about HD in Australia, which may accelerate the approval of new treatments once they become available. Information from the registry may help the Government decide to subsidise payment for treatments through the PBS. Better information about HD in Australia may inform levels of financial support, and locations of HD services. We cannot guarantee that you will benefit from participating in the Map-HD Registry.

What are the risks of participating?

 

We do not expect risks or disadvantages from signing-up to the Map-HD Registry. The Map-HD Registry has detailed policies and procedures in place to maintain the privacy and security of participant data. You can review the Terms and Conditions, which are available on the registry website, for details about data privacy and security. You can also request additional details by contacting the registry at info@hdna.com.au.

Will participation in the Map-HD Registry affect my current care and services?

 

No, your current care and services will not be affected if you decide to participate in the Map-HD Registry. 

How will information be collected and shared?

 

Information is collected through the self-enrolment of participants to the Map-HD Registry. Participants sign up to the registry by creating an account and then building a profile by entering information.

Where is the data stored?

 

The Map-HD Registry is housed at Monash University, in Victoria, on secure computer systems. Every effort has been made to keep your data safe and private. See the Data Privacy policy if you would like to review the details. 

What information do I need to provide?

 

Required information includes your first name and surname, date of birth, post code, how you would prefer us to contact you in future (via text, email, phone call or post), your sex and gender, whether you have had a blood test for the HD gene and whether you have been diagnosed with HD. 

Other questions are optional and are about your access to specialist clinical care and services, how far you travel to clinical appointments and whether you have access NDIS or Aged Care services.

Do I have to complete the questionnaire all in one go?

 

No. You can log in and out of your account and complete the questions at a time that suits you.

Can I ask someone to assist me in completing the questionnaire?

 

Yes. You can ask someone you trust to assist you in completing the questionnaire. 

You are also able to contact the research team at Monash University to assist you with any aspect of the registry. 

Email: info@hdna.com.au 

Phone: (03) 9902 0081

Are my answers saved as I progress through the questionnaire?

 

YesYou will be able to log out of your user account at any time and log back in later to return to the profile. While in the profile, as you proceed through the pages, each page is saved when you click the “Save and Continue” button. If you leave the page before clicking the button, the information you added for that page will not be saved and you will need to complete it again. 

What if I wish to withdraw from the Map-HD Registry?

 

No problem. You can withdraw from the registry at any time. To withdraw, you only need to delete your user profile. If you withdraw, the information you have provided to the registry will be retained and included as de-identified data in reports that help to characterise HD in Australia. 

How do I register another person in my care?

 

From the Connections tab at the top menu. Click on Register Others. Please ensure that the person you register wishes to participate. If they are 18 or older, they should sign their own consent form. If they do not understand what it means to be in the registry, there is an alternative consent for you to sign. If the person is a child, please use the parent/guardian form. 

I have registered someone in my care and would now like to register myself. How do I do this?

 

From the Connections tab at the top menu. Click on Register Myself. 

How to I use the referral system?

 

From the Connections tab at the top menu or from the Referrals tab on the menu on the left. The referrals system will only be available after you have completed the questionnaire and logged out. You will receive a notification from the HDNA team when the referrals option is available for you to use. 

How do I change my login password?

 

From the Account tab on the top menu. Click on Change Password. 

How do I delete my account?

 

From the Account tab on the top menu. Click on Backup/Delete Account. 

Is it possible to accidentally delete my account?

 

No. When selecting to delete your profile, you will receive a confirmation message and be required to enter your password to delete your profile. 

What is two factor authentication (2FA)?

 

An optional extra layer of security to your account login which requires two types of authentication. The first type of authentication is your password. The second type is a code which is displayed on your mobile phone. 

From the Account tab at the top menu, click on Two Factor Authentication to set this up.

Has this study been approved by a Human Research Ethics Committee?

 

Yes. This study has been approved by the Monash Health Human Research Ethics Committee.

Project ID: 70226 

Cannot find the answers you are looking for?

 

Contact the registry team and we will assist you. 

Email: info@hdna.com.au 

Phone: (03) 9902 0081