Research Data

ADIS is a cross-sectional study with 75 participants (25 cognitively normal, 25 mild cognitively impaired, 25 with biomarker confirmed Alzheimer’s dementia).

For each of these participants we collect the following data modalities:

• Blood samples: Blood samples are obtained to isolate immune cells and Peripheral Blood Mononuclear Cells (PBMCs) for which we are performing single cell RNA sequencing.
• CSF markers: Cerebrospinal fluid biomarkers of Alzheimer’s Disease are being collected. In addition, noradrenaline levels are being measured as an experimental marker.
• Classical cognitive assessment: The neuropsychological testing includes the evaluation of global cognition with the Mini-Mental State Examination (MMSE) and a comprehensive battery of the five cognitive domains.
• Altoida: The Altoida assessment consists of a digital evaluation of visual memory, visuospatial, and navigation performance through real-life activity monitoring or inside a virtual environment.
• Sleep evaluation: Sleep quality and disturbances are being studied by subjective (questionnaires) and objective methods (actigraphy device).
  • PSQI (Pittsburgh Sleep Quality Index): a self-rated questionnaire that assesses sleep quality and disturbances over a 1-month time interval.
  • ESS (Epworth Sleepiness Scale): a self-rated questionnaire that estimates daytime sleepiness.
  • Actigraphy: a wrist device that monitors two weeks of sleep-wake patterns while the patients in real-life conditions.

For more details please see our data catalogue: https://adata.scai.fraunhofer.de/modality

Please contact our project coordinator, Holger Fröhlich, in case you are interested in exploring a potential scientific collaboration: holger.froehlich@scai.fraunhofer.de.

Research Goals

Our aim is to understand, in how far sleep disturbances as well as immune related biomarkers signatures might allow for an earlier diagnosis of Alzheimer’s Disease. For this purpose, we apply statistical analysis, machine learning as well as agent-based modeling approaches.

How does ADIS protect patient data?

Patient data is protected in strict accordance with the General Data Protection Regulation (EU legislation for data protection) and the requirements of the ethics committee of the Hospital Clínic de Barcelona. In our case, this means that the participants who are recruited at the Hospital Clínic de Barcelona are, first of all, informed about the ADIS project and what their participation in the study entails.

For this, we developed an informed consent form (which includes information about the study as well as for what purpose and by whom their data is being used in the study) which was reviewed by the ethics committee (code HCB/2022/0059).

Participants are furthermore informed that they can withdraw their participation from the study at any point without the need to explain why. They also can request for their data to be deleted.

Information and samples from each participant are individually pseudonymised, by replacing participant names with an alphanumeric code at the clinic already. This way none of the other partners who conduct for example the blood sequencing, know who the samples are from.

In agreement with EU legislation, sharing of the pseudonymized data of study participants with research organizations outside the consortium is principally possible after the end of the project for research purposes. However, each request will be reviewed individually by the ADIS consortium, and legal agreements will be put in place with each requesting organization to ensure that each participant’s data is protected at the same level as during the runtime of the ADIS project.