Frequently Asked Questions

Who should sign up?

Only one:

  • To join FND Research Connect, you must be 18 years or older.

Anyone can join FND Research Connect.

To make experiments work, people without FND acting as controls are just as important as people with FND, and people who are in remission from FND (no longer have symptoms) may provide important insights about how FND develops and how its symptoms can go away.

No problem. Many people with FND also have other neurological conditions, and people with other conditions can be important as controls for certain experiments. When you sign up you’ll find a page where you can tell us about any other conditions you have.

People with self-diagnosed FND can still sign up. Since some studies may only enrol participants who have been diagnosed by a health professional though, so you may find you are contacted about fewer study opportunities than other people.

Having the right diagnosis is important, and FND is a treatable condition, so if you suspect you have it we recommend you discuss it with your doctor.

We understand that in some places getting medical help with FND can be hard. Unfortunately, we are unable to provide specific advice on the diagnosis or management of any person with FND.

For information on FND, we recommend starting with FND Guide, FND Hope, and FND Australia. If you live in Australia, FND Australia also maintains a directory of FND practitioners here.

What's Involved?

Joining is easy, and takes less than five minutes. Just fill out the enrolment form through our online portal and you’re enrolled.

Signing up for FND research connect involves filling out an online form. This takes about five minutes.

Every four months, we’ll email you and ask you to update your details. This takes 1-2 minutes online.

That’s it! We hope this is much less time than it would take to find studies to participate in by searching online or monitoring social media accounts.

We value your time, so we only email you when we have good reason to.

There are two main reasons we will contact you. The first is asking you to do a short questionnaire to keep our data up to date. We do that every four months. The second reason is to let you know when we have a study that you would be a good fit for.

Participating in Studies

We help recruit for all types of research from brain science, to clinical studies of FND, to studies of new treatments. Studies can be both in-person and online, so if you live out of town there’s still a study for you.

Yes! As well as matching people to FND studies, FND Research Connect also allows you to provide FND researchers with anonymous information about you and your FND for research purposes.

Many studies are also run online, so you may well find a study you can participate in from your own living room.

When you sign up, you have the option to consent to either or both of these ways to support research.

Most studies will directly contact participants to explain the results at the end of the study. Before you decide to enrol in a study, you will be informed of their result-sharing policy.

Summaries of the results of all research supported by FND Research Connect will also be published on our website on the Research Results page.

Data Safety and Privacy

Only 2-3 people at FND Research Connect can directly access the database.

Studies who use FND Research Connect will not get any of your data. We contact you on the researcher’s behalf, and you contact them to join the study if you are interested.

If you opt to in the consent form during the sign-up process, researchers will be able to apply to use an anonymised form of your data for research purposes (the information with anything that could remove you removed). If you are uncomfortable with this, you can still participate in FND Research Connect without allowing use of your information in this way.

We have an official application process that any researchers using FND Research Connect go through. You can read more about it here and here.

The application covers important points that make sure the study has approval from an ethics committee, that there are safe processes in place for protecting your data, and that the project is scientifically sound.

All FND Research Connect Data is stored in Australia on secure servers dedicated to storage of biomedical research data.

Yes. If you want to leave FND Research Connect you can do so at any time through our ‘Withdraw from FND Research Connect‘ page. When you do, you have the option for us to delete all of your data, or you may opt to let us continue using your anonymised data for research.

Yes. If you choose to allow researchers to use your information for research, you will be asked whether any researcher in the world who meets our privacy (and other) standards can use it, or whether you would like it restricted to researchers in your country. 

Still Got Questions?