Research infrastructure
Patiëntcohort
and biobank
The first step to building a research infrastructure for ME/CFS and other PAIS (like post-COVID) is to set up a specialized patient cohort and biobank. This ensures that high-quality patient data and biological samples are collected centrally and made available for biomedical research. This way, we do not have to do this again for every new research project. This saves time and money. That is why in the future, research projects can start faster both within the consortium and wthin international organisations that we collaborate with.
Background
What exactly is a patient cohort and biobank?
A patient cohort describes a group of people who have something in common, such as a certain disease or condition. This group of patients is studied together so researchers can learn more about the condition. Patients in a cohort participate in research by taking specific medical tests and/or filling out questionnaires. These data are collected in a database. Next to data, participants also provide biological samples like blood and saliva. These samples can then subsequently be stored in a biobank.
A biobank is like a library, but instead of books, it stores biological samples, such as blood, saliva, or DNA, from patients or participants in research. These samples are carefully preserved and catalogued for use on ongoing and future research.
By studying these samples and patient data and comparing them to those of healthy individuals, researchers can discover more about diseases. Like how they progress, and how different people might respond to treatments. This may lead to new medical breakthroughs, which are directed more to specific diseases.
NMCB
Our patiëntencohort and biobank
The patiëntencohort of the NMCB consortium will exist of
- ME/CFS patients
- Patiënts with other with other post-acute infection syndromes (PAIS)
- Controle group (healthy participants and people with Multiple Sclerosis)
Because ME/CFS has so much in common with other PAIS such as long-COVID, Lyme disease and the long-term effects of Q-fever, we will also collect data and samples of these patients in our research, as comparison. Next to that, healthy participants and people with MS are necessary as controls in the NMCB cohort.
Cohort composition:
750 ME/CFS patients
75% ambulant
25% bed- and homebound
450 Healthy persons
Demografically and geografically
matched
350 Clinical controls
MS patiënts (30%) and PAIS (70%)
(Q-koorts, Lyme)
550 post-COVID patients
75% ambulant
25% bed- and homebound
Young adult cohort
280 young adults
180 matched controls
Our process of collection
“To take into account the (severely) reduced mobility of our participants we adapted our collection process. the process consists of seperate steps. Steps 1 and 5 always take place at home. Steps 2 and 3 can be done at home when necessary. Step 4 can only be done in the hospital.
1
Medical screening
or
2
Physical examination
3
Biological samples
4
MRI scan
5
Cognitive test and medical questionnaires
Research participants will take part in a selection of the following parts depending on their mobility. The NMCB patient cohort will include:
1Initial medical screening
First, participants will undergo an initial screening process by completing various medical questionnaires and sharing their medical history. This will enable the NMCB team to identify whether a participant is eligible and can participate in the research and can take part in the next steps
2Physical exam
A general physical examination will take place, including measurements such as height, weight, blood pressure, pulse rate and pulse oximetry. Additionally, several assessments will be performed, ranging from cardiovascular measurements to neurological and assessments of the pain threshold.
3Biologische samples
Blood-, urine-, nasal swabs, faecal- and salivasamples will be collected.
4MRI-scan
Some patients will undergo an MRI scan.
5Cognitive test and medical questionnaires:
Patients will take the Amsterdam Cognition Scan and complete additional questionnaires on symptoms, functioning, quality of life, and sleep.