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.
Where can I learn what 'gene and cell therapies' are?
If you would like to find out more about the basic biology of cell and gene therapy, we recommend that you start with the resources in our 'Cell and Gene Fundamentals' section.
If you would like to read about the techniques and technologies involved in gene and cell therapy research, we suggest you start with our 'Methods and Tools' section.
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.
Our 'Considering a treatment offer?' page offers points which may help you in your decision.
The International Society for Stem Cell Research has created 'A Closer Look at Stem Cells', a collection of resources aimed to help you make a decision around stem cell therapy. Many of these same concerns apply to gene and cell therapies more broadly. These resources may be helpful in preparing for a conversation with your healthcare team (especially 'What to Ask').
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.
Our 'Considering a treatment offer?' page may be a helpful starting point in preparing for a discussion with your healthcare provider. The most important thing is that the treatment you choose aligns with your priorities and health goals.
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.
The term 'unproven therapies' refers to any therapy which has not yet been approved by a regulator as safe for use. This includes therapies which are supported by scientific evidence, and are still undergoing clinical trials to confirm their safety and effectiveness. At the other end of the scale, it includes procedures which are not supported by scientific evidence, and which may use legal loopholes to avoid complying with safety regulations.
Unscrupulous clinics can use this confusion to make a procedure seem more promising than it is.
If you have been told you are eligible for participation in a clinical trial, you can read about the different stages of the clinical trials process below.
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 can find information about clinical trials in Europe on the EU Clinical Trials Register.
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.
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.