The ALS Centre is looking for participants for the MEASURE study. This is a study that looks at metabolism in ALS patients. In addition to people with ALS, the ALS Centre is looking for family members of people with ALS, people with other motor neuron disease, such as PSMA, PLS or progressive bulbar paralysis (PBP) and people with peripheral neuropathy for this study.
The ALS Centre started the MEASURE study in 2017 because findings from previous studies (including the PAN study) pointed to increased metabolism in ALS. Such an increased metabolism is also known as ‘hypermetabolism’. Because there are currently too few participants to make good statements about metabolism, the ALS Centre would like to further expand the current MEASURE study. In this way, it will be possible to shed more light on the nature of this increased metabolism. With this extension, the ALS Centre also wants to investigate whether there is a link between certain DNA changes, the occurrence of weight loss, and increased metabolism.
Purpose of the study
The ALS Centre compares the metabolism of ALS patients with the metabolism of family members of people with ALS, people with other motor neurone disease and people with peripheral neuropathy. Here, the researchers look at the burning of fats and carbohydrates in body cells and the absorption of nutrients.
This research will reveal whether the metabolism is indeed increased, and in which patients this happens. The ALS Centre then examines whether this has consequences for the course of the disease and whether this can be remedied. This could include a high-calorie diet, which could slow down the disease progression.
What does participation entail?
You will come to the hospital sober for the measurements. First, you will take a seat in the BodPod. This is a device that reliably measures your body composition within a few minutes.
BodPod
After this, a so-called ‘Quark measurement’ is taken: a measurement of the rate of calorie burning. You will then be given a glass of drink containing a set amount of kilocalories, after which the ‘Quark measurement’ will be repeated to see how the burn rate is. Some questionnaires will also be taken, blood will be drawn and a neurological examination will take place.
Quark measurement
For carriers, family members, people with other motor neurone disease and those with peripheral neuropathy, participation in this study is a one-time visit to the hospital. This takes about 2.5 hours.
People with ALS have a choice between a one-off visit of about 2.5 hours or a series of visits every three months for two years.
Criteria for participation for people with ALS
– You have been diagnosed with ALS;
– You are able to lie flat for about an hour without difficulty swallowing or breathing;
– You have not had a tracheotomy or other supplementary ventilation in the past three months.
Criteria for family members of people with ALS
– There are several blood relatives in your family who have or have had ALS;
– You have no ALS-related symptoms.
Criteria for people with other motor neurone disease
– You have been diagnosed with PSMA, PLS or PBP.
Criteria for people with peripheral neuropathy
– You have been diagnosed with a form of peripheral neuropathy.
Participating in the study
If you meet the criteria and are interested or would like more information, please indicate your interest here .