An observational study in Auto Immune Disorders and Multiple Sclerosis, sponsored by Walton Centre NHS Foundation Trust. Enrolling by invitation. Open to participants aged 16 Years and older. Per ClinicalTrials.gov, last updated 2026-11-12.
Sponsored by Walton Centre NHS Foundation Trust · Observational
Auto-immune conditions affecting the central nervous system are complex and can be serious life-threatening disorders. Some are well described and have established pathways of diagnosis and management e.g. multiple sclerosis (MS). But most others are quite rare, with little knowledge on clinical course, effect of treatments and long-term outcomes. Current treatments are mainly based on case reviews and expert opinions that are often limited to very few cases encountered. Through the ADONeS Study data on a substantial number of patients could be collected and shared through collaborative research.
Purpose of Study
This void in rare disorders has now been recognised and there are now European and UK Government initiatives to improve research and care in Rare Diseases. This application is in keeping with that vision.
There are two arms to the study:
Example of Successful Research The investigators would like to cite a relevant example of our work so far. The investigatos have been conducting a study on a rare disorder Neuromyelitis optica (NMO) from 2003 (MREC 02/8/082 from 2003). NMO is a severe inflammatory disease of brain and spinal cord with severe attacks causing blindness paralysis and death within few years of onset. Very little was known about the disease when the Walton centre started the study in 2003. Over the last 13 years the investigators have systematically collected data on >200 patients that have led to >20 publications that have helped immensely the management of this disease worldwide. The investigators have reduced relapse rate and prolonged survival and have been designated a national center of excellence for NMO in UK (one of two centres funded by NHS England) and currently run the first multidisciplinary service for NMO in the world. The investigators have facilitated 3 international clinical trials and have done one at the Walton centre itself.
3,267 studies on the registry are indexed under Multiple Sclerosis; 662 are open to participants now.
This study's planned enrollment of 750 is above the median of 100 across 971 observational studies indexed under Multiple Sclerosis.
Browse Multiple Sclerosis studies →Walton Centre NHS Foundation Trust is the lead sponsor of 17 studies on the registry; 2 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Potential participants will be identified by clinical care team. Participants will be given information about the study and asked for informed consent after reading a written information sheet and having the opportunity to ask any questions.
If participants do not indicate interest, then no information or further discussion of the research will be provided, ongoing clinical care will not be affected.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria
- Not capable of
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
1. Patients attending Walton Centre FT with ADONeS. 2. Capable of informed consent 3. Non-written consent will be accepted from those who want to participate in the study and are able to grant informed consent yet are physically unable to give written consent due to their disability. At least one witness other than the clinician providing information for informed consent will be required to countersign the consent form to state that they have witnessed the participants' non-written consent.
Increase in overall knowledge and level of understanding regarding autoimmune disorders of the nervous system
Overall trend analysis of HES (Hospital Episode statistics) data regarding patients with autoimmune disorders of the nervous system. This includes reviews of historical clinical information, genetic findings, and tissue and blood samples.
Time frame: From study start (September 2015) to study completion (Anticipated Aug 2028), assessed continuously through retrospective review of medical records and prospective collection of clinical and research data (approximately 13 years).
No study locations are listed for this record.
Plan to share: Yes
No publications or documents are linked to this record.
Started Sep 2015 (actual). Primary completion is estimated for Oct 2028, 157 months after the start.
Of 335 non-industry observational studies under Multiple Sclerosis, half reached primary completion within 36 months of starting (the median), counting those still running; a quarter within 13 and three quarters within 81. This study's planned 157 months is above that.
Counting every sponsor, half of 426 studies reached it within 41 months; a quarter within 15 and three quarters within 75.
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
No contact was published for this record. The registry link below has the sponsor’s details.
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Walton Centre NHS Foundation Trust