RecruitingOBSERVATIONAL

Genetics of Endocrine Tumours - Familial Isolated Pituitary Adenoma - FIPA

We are looking for new genes that can cause unusual growths, called tumours, in the pituitary gland. This small gland, located at the base of your brain, plays a big role in controlling hormones. When tumours develop here, they can lead to conditions like acromegaly (where body parts get too big) or gigantism (unusual height). Our main goal is to understand why these tumours form by identifying the specific genes involved. We'll be studying people with these conditions, particularly those where it seems to run in families or when it starts at a young age. By finding these genes and learning how they work, we hope to improve our understanding and potentially find better ways to help people affected by these pituitary conditions.

At a glance

Status

Recruiting

Sponsor

Barts & The London NHS Trust

Enrolment target

10,000

Start

01 Mar 2007

Estimated completion

31 Dec 2037

Acromegaly Gigantism Familial Isolated Pituitary Adenoma FIPA Pituitary Adenoma Predisposition PAP

What is this study about?

This research is all about understanding why some people develop growths, called tumours, in a small but very important gland in their brain called the pituitary gland. This gland acts like a control centre for many hormones in your body. When these tumours develop, they can sometimes cause serious health problems, such as acromegaly, where certain body parts grow too large, or gigantism, where someone grows unusually tall.

Our main focus is to discover specific genes that might make someone more likely to develop these pituitary tumours. We'll be studying a gene called AIP (pronounced A-I-P), which has already been linked to some cases, and looking for other similar genes. We want to know if changes in these genes cause tumours to form, how they affect the cells, and if they play a role even in cases where the condition doesn't seem to run in the family.

By figuring out which genes are involved and how they work, we hope to get a much clearer picture of why these tumours start in the first place. This knowledge is crucial because it could help doctors diagnose conditions like acromegaly and gigantism earlier, and potentially lead to new and more effective treatments in the future.

Key takeaways

This study is looking for new genes that cause pituitary tumours.
It aims to understand why conditions like acromegaly and gigantism develop.
Participation involves giving a blood sample and potentially sharing existing tumour tissue.
Your genetic information will be kept private and coded.
The research won't directly treat you, but could help future patients.

Who may be eligible?

This study is looking for people who have certain types of pituitary tumours. You might be suitable if your condition seems to run in your family, or if you developed acromegaly at a young age. We are also interested in people with pituitary tumours that don't necessarily have a family link.

We are specifically looking for people with conditions like acromegaly or gigantism. We are not including people whose pituitary conditions are part of a genetic syndrome called MEN (Multiple Endocrine Neoplasia), as the genes for these are already well-known.

If a doctor thinks you might be suitable, they will first speak to you about the study. You can also contact the research team directly if you believe you fit the description and are interested in taking part. You can leave the study at any time if you change your mind.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I have acromegaly or gigantism.
My pituitary tumour condition might run in my family.
My pituitary tumour started when I was relatively young.
I have had other family members with similar conditions.
I am not currently part of a study for MEN syndrome.

Answer every question to see your result.

What does participation involve?

If you decide to take part, the first step involves a phone call to talk through the study in detail and answer any questions you have. We'll then send you an information sheet to read and a consent form to sign if you wish to proceed. Taking part will involve giving a blood sample during your regular clinic visit. This blood sample will be used to look at your genes.

If appropriate, and with your permission, we might also ask other family members to participate, especially those who have similar tumours or those who are healthy but could help us understand the genes better. We might also collect tiny pieces of tumour tissue that were removed during surgery, if available.

Total duration of participation is not fixed, as this is a research study focused on identifying genetic causes, which involves laboratory analysis of samples.

Potential risks and benefits

Taking part in this study may not directly benefit you, but the information we gather could help future patients with similar conditions. There are minimal risks involved, mainly from giving a blood sample, which might cause a small bruise or discomfort. Your privacy is very important; all samples will be coded with unique ID numbers, so your personal information is kept separate from your samples. You are free to withdraw from the study at any time without giving a reason, and this will not affect your medical care.

Locations (3)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Leicester Infirmary
Verified postcode
Leicester, United Kingdom· Recruiting
Barts and the London medical School
Verified postcode
London, United Kingdom· Recruiting
Royal Victoria Infirmary
Verified postcode
Newcastle upon Tyne, United Kingdom· Recruiting

Common questions

What is the pituitary gland?

It's a small gland at the base of your brain that makes hormones that control many body functions.

What are pituitary tumours?

These are usually non-cancerous growths on the pituitary gland. They can affect the hormones your body makes.

What is acromegaly or gigantism?

These are conditions caused by too much growth hormone from a pituitary tumour, leading to enlarged hands, feet, or unusual height.

Will taking part benefit me directly?

It's unlikely to directly benefit you, but your participation can help us understand and treat pituitary conditions better in the future.

What happens to my samples?

Your blood and any tumour samples will be coded with a unique ID, so your name isn't linked to them, and then analysed in a lab to look for gene changes.

How to find out more

Marta Korbonits, MD PhD

m.korbonits@qmul.ac.uk 020 7882 6238 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.