We are collaborating with several other labs and teams on ALS pre-clinical projects, focusing on different subjects.
Some of the topics we are currently investigating :
- Troponin T levels in ALS patients
- Cardiac involvment in ALS
- Death in ALS
- Biomarkers in ALS
- Quality of life for ALS patients
- Neurofilaments in ALS
- Speech pathology in ALS
- Cognition in ALS
The ALSrisc project
What is the ALSrisc project?
The ALSrisc project was created in 2015 to better understand ALS.
The project is a collaboration between Caroline Ingre and Fang Fang and bridges the gap between clinic and research by studying the mechanisms of the disease to improve early detection and prognosis.
Recruitment of participants
Participants in ALSrisc are recruited from the greater Stockholm area at the Karolinska ALS Center as either cases or controls. Cases in ALSrisc are recruited from patients diagnoses with either ALS, PLS (primary lateral sclerosis), PSMA (progressive spinal muscular atrophy) or MND (motor neuron disease) and are contacted via phone or during a hospital visit by nurses or doctors. During this, patient healthcare interaction, the potential participants are given detailed written information on ALSrisc. In addition to cases, we recruit spouses and siblings from patients as healthy individual. These two groups play a distinct role as controls. Here, spouses act as shared adult-life environmental controls, where sibling act as shared genetic and early-life environmental controls.
What data do we collect?
Data collected in ALSrisc comes from three major sources:
- Clinical data - Through medical journals and cross-linkage to the Swedish National MND Quality Registry which includes >99% of all newly diagnosed patients with MND in Stockholm, the ALSrisc project follows patients from diagnosis until death. This includes information such as site of onset, disease progression, spreading pattern, treatment, and routine clinical testing. Furthermore, patients are asked to undergo additional clinical testing, including MRI- and FDG-PET imaging and cardiac studies. By collecting all these clinical data, ALSrisc builds a database on the diverse clinical phenotype on ALS what again allows us to link disease outcomes with recorded biomarkers, lifestyle, and environmental factors.
- Questionnaires - Questionnaires are a way for researchers to collect information on lifestyle, and environmental factors. Collected information in ALSrisc include information on passed environmental exposure (e.g., housing, employment, military, physical activity), family medical history, and dietary habits. Here, both cases and controls are asked to participate and is a one-time collection. Additionally, ALSrisc also follows mental health and cognitive abilities of the patients throughout their study participation. Here, the participants are asked to fill in additional questionnaires at recruitment and every 6 months during their participation. All questionnaires are sent per mail to each of the participants and either send back or collected during hospital appointments.
- Biological samples - The third pillar of data in ALSrisc comes from biological samples and stored at biobanks. All participants are asked to contribute with blood samples for plasma and serum collection, hair, nails, saliva, and feces. Samples are either taken during home visits or at the hospital and participants are given the choice to either contribute with all sample are only part of it. In addition, we also collect cerebrospinal fluid from cases during their initial diagnosis. Only patients are then asked to contribute with follow up samples on a yearly basis. Between 2015 and 2021 ALSrisc has built up a large biobank of paired samples and several databases of over 300 patients and over 200 controls from two groups with similar genetic and environmental background. These resources are currently being used in a diverse set of ALS research projects.
For more information on the ALSrisc project, contact: