Sarcoidosis is an inflammatory disease that affects multiple organs in the body. In people with sarcoidosis, abnormal masses, or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body. These granulomas may alter the normal structure and possibly the function of the affected organ(s). Sarcoidosis most often occurs between 20 and 40 years of age. It is estimated that up to one in 10,000 people in the UK have sarcoidosis. It can present in a variety of ways, ranging from a mild, acute self-limiting disease to chronic disease involving several organs and causing severe symptoms and functional impairment. Overall mortality in sarcoidosis is 1-5%, usually due to pulmonary, cardiac or neurological involvement or their complications (Sarcoidosis UK, 2018).

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Neurosarcoidosis (NS) refers to a type of sarcoidosis affecting the nervous system which includes the brain, spinal cord, or peripheral nerves. Neurosarcoidosis occurs in approximately 5-10% of people with sarcoidosis. About 100 people are diagnosed with neurosarcoidosis in the UK each year (NICE Evidence Review, 2018). It can affect the central nervous system (CNS, the brain and spinal cord) and peripheral nervous system (including the 12 cranial nerves supplying the head and neck). When the nerves are affected, there may be weakness, numbness of the face, problems with hearing, weakness of the tongue, difficulty swallowing, or double vision. Other patients have more serious disease affecting the CNS such as meningoencephalitis (inflammation of the lining of the brain and spinal cord) or vasculitis (inflammation of the blood vessels in the brain). There is a specific subgroup of neurosarcoidosis involving the brain parenchyma which can cause tissue destruction. Neurosarcoidosis has no known cure and whilst spontaneous remission has been observed, early identification and long-term treatment is often required to prevent severe disability

and even death.

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We also know that patients not only have organ-related symptoms, but patients may also suffer from a variety of nonspecific disabling symptoms that cannot be explained by granulomatous inflammation of an organ, such as fatigue and cognitive difficulties. This has a great impact on the lives of sarcoidosis patients, since they are mostly young.

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Our research needs a large group of people with neurosarcoidosis on whom we have a detailed measurement of their symptoms and disabilities at multiple time points. In FINDeRS-NS, our ambition is to collect and analyse more symptom measurements in 200 people with NS.

 

It will give us an unrivalled ability to investigate biological changes in NS and to discover how therapeutic, physical, emotional and social factors affect disease outcome and progression.

 

The Principal Investigator for this study is Dr Tarunya Arun, Consultant Neurology at the University Hospitals of Coventry and Warwickshire.

 

We recommend you discuss your involvement in FINDeRS  Neurosarcoidois study with your regular neurological team. They might be able to assist you in taking part. Please feel free to forward the website address to your neurological team. We welcome contact from neurological teams and will facilitate their involvement in the study. For more information please contact tracy.marsden@uhcw.nhs.uk .