Earlier Diagnosis and Better Treatment Mission Related to the Cohort Programme (LuxPARK)

Luxembourg Institute of Health

Status

Enrolling

Conditions

Parkinson Disease

Treatments

Other: Observational study with sample and data collection

Study type

Observational

Funder types

Other

Identifiers

NCT05266872

CNER 140174_ND

Details and patient eligibility

About

The Luxembourg Parkinson's Study is an ongoing longitudinal nationwide monocentric observational study. It collects extensive clinical, molecular, genetic, and digital device-based longitudinal data, as well as foreseen post-mortem diagnostic validation (Hipp et al., 2018). The cohort consists of more than 1,600 participants from Luxembourg and the Greater Region, comprising patients with typical PD or atypical parkinsonism - irrespective of disease stage, age, cognitive status, comorbidities, or linguistic background - followed-up annually and age- and sex-matched healthy control subjects followed-up every 4 years. To provide a large, longitudinally followed, and deeply phenotyped set of patients and controls for clinical and fundamental research on PD, the investigators have implemented an open-source digital platform that has been partly harmonized with other international PD cohort studies. This effort is flanked by comprehensive biosampling efforts assuring high quality and sustained availability of body liquids and tissue biopsies (including blood, urine, stool, saliva, hair, skin biopsy and cerebrospinal fluid). All data and samples are stored, curated, and integrated into state-of-the-art data and biobank facilities.

Enrollment

1,800 estimated patients

Sex

All

Ages

18+ years old

Volunteers

Accepts Healthy Volunteers

Inclusion criteria

Subjects with neurodegenerative disease or having Parkinson's disease (typical PD or atypical parkinsonism)
Subjects of all genders with a full capacity of consent
Subjects with a limited consent capacity if the legal guardian/authorised representative is in agreement
Subjects of at least 18 years of age at the time of inclusion

Exclusion criteria

Refusal to sign the informed consent
Limited capacity of consent on the part of the donor, if there is no legally determined guardian/authorised representative, or the latter is not present or does not agree with the inclusion
Active cancer
Pregnant women
Underage subjects of less than 18 years of age
Refusal to comply with mandatory sample collection
For invasive procedures, i.e., lumbar puncture and skin biopsy: relevant blood clotting impairment, e.g., anamnestic evidence of frequent or prolonged bleedings.