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GET INVOLVED IN SARCOIDOSIS RESEARCH

This page contains all the information you need to help you get involved with the latest sarcoidosis research. You may find opportunities to get involved in SarcoidosisUK research, NHS clinical trials and other research from external partners. If you are a researcher and would like to promote your project on this page, please get in touch.

Clinical Trials

The UK Clinical Trials Gateway (UKCTG) website displays information about clinical trials and other types of research from several different UK registers. Find information about current sarcoidosis-related clinical trials in the UK.

Tip: Change the search filters to choose currently recruiting trials in region(s) you are interested in. This page is continually being updated.

Considering taking part in a clinical trial? Read NHS information and guidance about taking part in a clinical trail.

Join the SarcoidosisUK Patient Council

The SarcoidosisUK Patient Council is a group of trusted sarcoidosis patients and their carers who help to inform, develop and advance a wide range of sarcoidosis research. Click here to find out more about the Patient Council and apply.

Surveys and Petitions

Sign the Charter for Lung Health. This is an urgent call to action by the Forum of International Respiratory Societies (FIRS) for better lung health around the world. The petition will be delivered to The Director-General of the World Health Organisation.

Research project on how the rare disease patient voice can be better captured in health technology assessment (HTA) processes for therapies to treat rare and ultra-rare conditions. Carried out by NICE Highly Specialised Technologies and Alpha-1 UK Support Group. This survey aims to uncover what is lacking in the HTA system that would make the process better and more engaging for rare disease patient groups. Click here to have your say.

A new European Lung Foundation survey aims to learn more about how having a lung condition can affect a person’s options and choices around family planning and pregnancy. They would like to find out more about the experiences of people with any lung condition, including sarcoidosis, from considering starting a family to after childbirth. The survey is available online here. Responses will help healthcare professionals working with the European Respiratory Society (ERS) and the Thoracic Society of Australia and New Zealand (TSANZ) to understand how people with a lung condition are currently cared for during pregnancy, and will help to highlight areas where more research is needed.

Committees and Taskforces

NICE are looking for patients to join their guideline committees. Follow the link to find out more.

You might also like to join the SarcoidosisUK Patient Council – see box on this page.

Related content from SarcoidosisUK:

Awareness

Everything SarcoidosisUK does improves awareness of sarcoidosis. See how you can get involved.

Research

SarcoidosisUK fund world-leading research into sarcoidosis. Our goal is to find a cure for the condition.

Contact

We would love to hear from you. Please get in touch with any questions, comments or suggestions.

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