RecruitingOBSERVATIONAL

CABP2 Patient Registry and Natural History Study

This study, called the CABP2 Patient Registry, is collecting important health information from people who have hearing loss linked to changes in the CABP2 gene. It's aiming to build a detailed picture over time, known as a 'natural history study', of how this specific type of hearing loss progresses. The research involves gathering details about your genetic test results and your hearing test results (audiometry). By collecting this information from individuals across the UK and Germany, researchers hope to better understand the CABP2 condition. This will help them learn more about who gets it, how it affects hearing, and how it might change over the years, which could eventually lead to better ways to help people in the future. The study is run with careful ethical approval to ensure patient safety and privacy.

At a glance

Status

Recruiting

Sponsor

University Medical Center Goettingen

Enrolment target

100

Start

16 Aug 2024

Estimated completion

16 Aug 2049

What is this study about?

This study is like setting up a special healthcare database, or 'registry', specifically for people who have hearing difficulties because of an issue with a gene called CABP2. Genes are like instruction manuals for our bodies, and sometimes a small change in one can affect how parts of us work, like our hearing.

The main goal of this registry is to gather as much information as possible about people with this particular type of hearing loss. By collecting details from many individuals, such as their genetic test results and regular hearing check-ups, researchers can start to see patterns. This helps them understand the "natural history" of the condition – in other words, how it typically develops and changes over time, without any new treatments.

Understanding the natural history is really important because it provides a baseline. It helps doctors and scientists know what to expect, and in the future, it might help them design better studies for new treatments. For example, if they know how the hearing loss usually progresses, they can then see if a new treatment makes a difference. This study is being run in both English and German to include more people and gather a wider range of information.

Key takeaways

This study collects information on a specific type of inherited hearing loss.
It focuses on hearing loss caused by changes in the CABP2 gene.
The goal is to understand how this condition develops over time.
Participation involves sharing existing genetic and hearing test results.
This research aims to help improve future understanding and care for CABP2-related hearing loss.

Who may be eligible?

To be part of this study, you need to have a specific genetic diagnosis. This means your genetic tests must show that you have changes in both copies of your CABP2 gene that are causing your hearing loss. You also need to have had a hearing test, known as an audiometry test, to confirm your hearing abilities.

Anyone of any age, male or female, can potentially join if they meet these main requirements.

However, you won't be able to join the study if your hearing loss is found to be caused by problems with a different gene or if doctors believe there's another reason for your hearing loss that isn't connected to the CABP2 gene.

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.

Have you been diagnosed with hearing loss?
Have your genetic tests shown changes in both of your CABP2 genes?
Do you have results from a hearing check (audiometry)?
Have doctors confirmed your hearing loss isn't caused by another different genetic problem?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this registry, it will mainly involve sharing existing medical information. This includes details from your genetic tests that show changes in your CABP2 gene and results from your hearing tests (audiometry). There are no new medications to take, no extra doctor's visits just for the study, and no specific follow-up appointments required beyond your usual medical care. The study aims to collect information you already have or would have as part of your standard visits with your doctor. The total duration of your 'participation' is simply how long your approved information remains part of the registry.

Potential risks and benefits

The main benefit of joining this study is helping researchers gain a much better understanding of CABP2-related hearing loss, which could eventually lead to improved care or future treatments. Your privacy is a priority, and all information will be handled carefully and according to strict ethical rules. The risks involved are very low, as you are primarily sharing existing medical information. There are no medical procedures or medications involved that would put your health at risk. You are always free to withdraw your consent and leave the study at any time without it affecting your medical care.

Locations (1)

University Medical Center Goettingen
Verified postcode
Göttingen, Germany· Recruiting

Common questions

What is the CABP2 gene?

The CABP2 gene gives instructions for making a protein important for how tiny cells in your ear work. Changes in this gene can affect hearing.

What is 'hearing impairment'?

Hearing impairment simply means you have some level of hearing loss, from mild to profound, which can make it harder to hear sounds.

What is 'audiometry'?

Audiometry is a common and painless hearing test where you listen to different sounds through headphones to check how well you hear.

Will I get any special treatment from joining?

Joining this study won't provide you with new treatments. It's about collecting information to help future research.

Will my personal details be kept private?

Yes, all your information will be handled with strict privacy and approved by an ethics committee to keep your details safe.

How to find out more

Barbara Vona, PhD

barbara.vona@med.uni-goettingen.de +49-551-38-51337 Official trial record

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