The MS-CEBA Study: Determining Cognitive, Energetic, Behavioural and Affective (CEBA) Profiles in Multiple Sclerosis
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: There is no intervention..
- Who it may be relevant to
- Registry conditions: Multiple Sclerosis. Basic parameters: 18 years — 70 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Netherlands
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
Multiple Sclerosis (MS) is an invalidating neurological disease known to cause physical symptoms, which usually are the main focus of treatment. However, non-physical, more neuropsychological, symptoms also frequently occur, concerning the Cognitive, Energetic, Behavioural and Affective (CEBA) domains. Symptoms in the CEBA domains are known to negatively affect societal participation, and thereby quality of life. Unfortunately, despite their negative consequences, CEBA symptoms are not always timely recognized in people with MS (pwMS). Moreover, despite the fact that there are various effective neuropsychological treatments available for neurological patients with these symptoms, most pwMS do not yet receive these treatments. Although findings in group studies confirm that each of the CEBA domains can be affected in pwMS and correlations between symptoms regarding different CEBA domains have been found, there are large differences between individual pwMS with regard to which CEBA symptoms co-occur and which CEBA symptoms prevail. In order to optimize care for pwMS (e.g. timely referring patients to suiting neuropsychological treatment) there is need for a large scale study investigating over the whole range of CEBA symptoms how frequent these occur, whether and how symptoms co-occur, and thus if CEBA profiles can be identified. Identification of CEBA profiles can serve to quickly identify pwMS with neuropsychological problems in clinical practice, and provide an indication for possible neuropsychological treatment. If CEBA profiles are identified, it is considered likely that multiple CEBA symptoms will be prominent within a single CEBA profile. Here, subjective burden of pwMS can play an important role in determining which symptoms the main focus should be on in possible neuropsychological treatment. Currently, a clear and standardized procedure with a feasible neuropsychological screening instrument quickly identifying and combining CEBA profile and subjective burden, providing a suitable indication for possible neuropsychological treatment, is lacking. The aim of the present study is identifying CEBA profiles in pwMS and subsequently developing a feasible screening instrument allowing quick identification of CEBA profile and subjective burden of pwMS in clinical practice, providing a suitable indication for possible neuropsychological treatment. If needed, combining of or adjustments to existing neuropsychological treatments will be suggested in order meet the needs of pwMS with CEBA symptoms. All of this with the ultimate aim to improve societal participation, and accordingly quality of life, of pwMS.
Interventions
- Other There is no intervention.
There is no intervention.
Primary outcome measures
- Cognition [Time frame: 6-48 months]
- Energy [Time frame: 6-48 months]
- Behaviour [Time frame: 6-48 months]
- Affect [Time frame: 6-48 months]
Secondary outcome measures (3)
- Level of societal participation [Time frame: 6-48 months]
- Subjective burden [Time frame: 6-48 months]
- Demographic information [Time frame: 6-48 months]
Eligibility criteria
In order to be eligible to participate in this study, a patient must meet all of the following criteria:
Inclusion criteria
- Confirmed MS diagnosis (all subtypes);
- Age18-70;
- Adequate command of the Dutch language.
Exclusion criteria
- Not being able to participate in a short neuropsychological assessment (NPA) as judged by the MS clinician and/or investigator;
- Presence of any other neurological and/or major psychiatric condition.
The group of HC's will be matched to the patient group on age and education level.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Cohort
Study locations
Netherlands · 1 center
- University Medical Center Groningen (UMCG) — Groningen
Publications
- Reinhardt A, Rakers SE, Heersema DJ, Beenakker EAC, Meilof JF, Timmerman ME, Spikman JM. Protocol for the MS-CEBA study: an observational, prospective cohort study identifying Cognitive, Energetic, Behavioural and Affective (CEBA) profiles in Multiple Sclerosis to guide neuropsychological treatment choice. BMC Neurol. 2024 Jun 28;24(1):224. doi: 10.1186/s12883-024-03737-6. PMID 38943063
Identifiers
NCT: NCT06016309 · NL2023.202315914