Skip to main content

Do you have a decision to make around your own healthcare, or the healthcare of a loved one?

If you have been offered a gene- or cell-based therapy as part of your care, this page will direct you to information to consider when making your decision. We recommend that you speak with a trusted healthcare advisor, and ensure that your decision is the right one for you.

A note on language use

In all areas of healthcare, the person being offered a therapy may not be solely responsible for their own healthcare decisions. While this page refers to the person who will be receiving a therapy, all the information and guidance applies to someone making a decision around a loved one’s healthcare.

I have been offered a gene or cell-based therapy. How do I know if this is the right choice for me?

It is important to consider how this therapy will align with your lifestyle and health priorities. You should also consider the implications it may create for future treatment options.

I have been told I am eligible for more than one kind of therapy. How do I decide which is right for me?

If you are eligible for more than one kind of therapy, your healthcare provider should help you to weigh up the benefits and drawbacks of each option.

The therapy I have been offered has been described as ‘unproven’, ‘investigational’, ‘experimental’ or ‘unregulated’. How do I know whether it is safe?

It is important to know that while these terms have similar in everyday conversation, they have distinct, specific meanings in a clinical and legal context.

Where can I find information about clinical trials for my condition?

If you are interested in participating in a clinical trial, you should let your healthcare team know. They may know about suitable opportunities.

You may be able to find a national registry of clinical trials on either your national health provider’s website, or a government website.

National support organisations for specific conditions may curate a list of ongoing clinical trials in your region.

Be aware that being listed on a clinical trials registry does not mean that a trial is safe, ethical, or scientifically sound. If you are interested in a specific trial, you should discuss the details with your healthcare team.

How can I find out more about gene and cell therapy for my condition?

We recommend that you start with our condition-specific factsheets and resources. You will find these under the 'Condition' tab at the top of this page. We are continually adding new material on all topics.

We also suggest that you find a national or local support organisation for people living with your condition. Your healthcare provider or social worker may be able to recommend an appropriate organisation, and help you to contact a local branch.

If you are attending a specialist centre or centre of excellent for treatment for your condition, they may also be able to put you in contact with local patient support groups.

Le contenu de cette page vous a-t-il été utile ? Envoyez-nous vos commentaires