GET INVOLVED IN SARCOIDOSIS RESEARCH
This page contains information and links to help you get involved with sarcoidosis research. We are always updating the content depending on current research projects. You may find opportunities to get involved in: SarcoidosisUK research, research from external partners or NHS-backed clinical trials. If you are a researcher and would like to promote your project on this page, please get in touch.
The UK Clinical Trials Gateway (UKCTG) website pulls through information about clinical trials and other 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.
General NHS information and guidance about taking part in a clinical trail.
Committees and Taskforces
A sarcoidosis treatment guideline is being developed by a European Respiratory Society (ERS) working group and is due to be published at the end of 2018. The guideline will be used by doctors and other healthcare professionals to help them treat people with sarcoidosis in the best way possible. To help with this please complete this questionnaire. Your responses are anonymous and will feed into the activities of the ERS working group to ensure that patient views are considered.
NICE are looking for lay members to join the persistent pain guideline committee. They are looking for people with an understanding of persistent pain and the issues important to patients and their unpaid carers. This understanding could have been gained:
through personal experience you have of treatment and care provided for you by the NHS
as a relative or unpaid carer of someone who has used relevant health services
as a volunteer or employee of a relevant voluntary organisation or support group.
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.
Other Research Projects
Impact of diet and physical activity on symptom of pulmonary Sarcoidosis. L. Morton-Holtham (Kingston University).
Establishing the existence of non-pharmacological multifactorial patterns within Pulmonary Sarcoidosis. L. Morton-Holtham (Kingston University).
WISE (Worldwide Sarcoidosis Research Study) A research study designed to gain more information about the characteristics and clinical course of sarcoidosis in order to help physicians and researchers better understand and treat the disease. A. Gerke (University of Iowa).
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 Organization.
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.
Related content from SarcoidosisUK:
Everything SarcoidosisUK does improves awareness of sarcoidosis. See how you can get involved.
SarcoidosisUK fund world-leading research into sarcoidosis. Our goal is to find a cure for the condition.
We would love to hear from you. Please get in touch with any questions, comments or suggestions.