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EMBARC – The European Bronchiectasis Registry

Bronchiectasis (BE) is an orphan disease, with few evidence based treatments and a lack of data regarding epidemiology, co-morbidities, pathophysiology, severity and prognosis. There have been few longitudinal or cross-sectional studies in BE.

What is the purpose of the study?

This study is seeking to establish a register of patients diagnosed with bronchiectasis around Europe. We wish to know more about how we treat bronchiectasis and how many patients there are in Europe with this condition. One way of doing this is to record information about patients that are diagnosed with bronchiectasis. As part of this study we will store simple information about you, such as your age, the results of your blood tests and x-rays and the treatments that you have received. This will help us to understand the impact of bronchiectasis on you, and on healthcare in Europe. The users of the database may include doctors, university researchers and companies including the pharmaceutical industry. The registry may require users to pay towards the costs of administering the database but the database is not profit making. You will not personally receive any financial benefit from taking part in the research.

Currently there are very few drugs or treatments that are proven to work for bronchiectasis because very few clinical trials have been performed. The data collected in the registry will help us to evaluate how well treatments work and help to design better clinical trials by understanding more about the disease.

Finally, we want to identify patients who may be willing to take part in clinical trials in the future. If you may be willing to consider participating in the future, we will store your contact details on file. If the opportunity to take part in a trial arises, your doctor may contact you. Participation in any future study or trial will be entirely voluntary and any future study will have the approval of your local research ethics committee or review board. You may ask at any time not to be contacted further.

Why have I been chosen?

You are being asked to participate because your doctor has diagnosed you with bronchiectasis.

Do I have to take part?

No. It is up to you to decide whether or not to take part. If you do decide to take part you will be asked to sign a consent form, and will be given this information sheet and a copy of the signed consent form to keep. If you decide to take part you are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect the standard of care you receive. Any data about you that we have collected will remain in the database, unless you ask us to delete it.

What will happen to me if I take part?

We will record information about your health in a secure computer database which will be held in the University of Dundee. We will record simple information such as your name, age, gender, the results of your blood tests and x-rays, and information of the treatment that you receive. We may also record other electronic data about you collected on General Practice and Hospital computer systems, such as your blood results and details of the treatments you have received. Only your doctor and staff maintaining the registry will have access to your personal data. When the study data is provided to researchers to be analysed, your personal information will be removed, so that you cannot be identified. No results that can identify you personally will be released to the public or published.

If you agree to be contacted for future studies, we will store your telephone number, address and/or e-mail address on file. If an opportunity arises in the future for a clinical study or trial in bronchiectasis that you may be eligible to participate in, your doctor would contact you to ask if you wish further information about the study. You will be under no obligation to take part in this study and any future study would be approved by your local [research ethics committee] [institutional review board]. You can ask us at any time not to be contacted further.

What are the possible disadvantages of taking part?

Participating in the study will have no implications for you or your treatment, or for future insurance. All data will be stored securely. We do not anticipate any disadvantages of taking part.

What the possible benefits of taking part

There will be no direct clinical benefit to you from taking part in the study. However, the outcome of the research could influence the care of other patients in the future.

Contact for Further Information

Nadia Elkaram – Nadia.Elkaram@stft.nhs.uk

 

Clinical Trials in Respiratory Disorders

Select a trial from the list below to find out more about what it’s all about and how you can get involved in helping others.

EMBARC – The European Bronchiectasis Registry

This study is seeking to establish a register of patients diagnosed with bronchiectasis around Europe.

EME – TIPAC – Idiopathic Pulmonary Fibrosis Study

Treating pulmonary fibrosis with co-trimoxazole

LuCID Lung Cancer Indicator Detection

The goal of this study is to carefully look at the compounds someone exhales to determine if analysis of exhaled breath can detect lung cancer.

NIVO – 1 year longitudinal follow up after assisted ventilation

This study aims to track the progress of patients that have required assisted ventilation for one year after discharge from hospital.

Instage-IPF IMP study

This study is for patients that have been diagnosed with Idiopathic pulmonary fibrosis.

MARS2

The aim of the MARS2 study is to determine if it is feasible to enrol patients with mesothelioma into a study randomising them to chemotherapy only or chemotherapy and lung-sparing surgery.


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