LARGE-PD

The Latin American Research consortium on the GEnetics of Parkinson’s Disease (LARGE-PD) was born in 2005 as a multicenter collaboration across Latin America in an effort to increase the knowledge about PD in these countries.


The Latin American Research consortium on the GEnetics of Parkinson’s Disease (LARGE-PD) was born in 2005 as a multicenter collaboration across Latin America in an effort to increase the knowledge about PD in these countries.

Human genetics as well as epidemiological studies, have proven to be valuable tools for better understanding the molecular pathophysiology of PD. This Consortium is generating the first large PD case-control sample in Latin America that will allow researchers to dig deep into these genetic and environmental factors that lead to the development of Parkinson’s disease.

We believe that including these representative populations will substantially increase the likelihood of discovering new susceptibility genes for the disease. Additional benefits from this approach include: (1) providing a more rational basis for the selection of mutations for clinical genetic testing within specific geographic regions, and (2) identifying subgroups of individuals at high-risk for PD who would be good candidates for future trials (possibly based on genetic profile).

At the present time, LARGE-PD is composed of recruitment sites at many major academic centers and hospitals in the Americas and the Caribbean (LARGE-PD Centers). Dr. Ignacio Mata, Assistant Staff/Professor at the Cleveland Clinic, in the US serves as the coordinator for the consortium, ensuring standardized data collection, DNA storage, and quality control. Currently, LARGE-PD includes 3,857 individuals (over 1,800 PD patients and more than 2,000 healthy controls) and our goal is to double this number by 2021. We are always actively searching for new participants so: 1) If you are a clinician/researcher interested in including your cohort please contact us here. 2) If you are an individual in the USA (either a Person with Parkinson or a healthy control) and want to participate, you can find here the information to do so in our brochure. 3) If you are an individual outside of the USA (either a person with Parkinson's disease or healthy control) and want to participate, let us know here and we will try to find a recruitment center near you.

AIMS

  • The major aim is to establish a multicenter PD genetics consortium across Latin America. Patients and controls will be enrolled across each site using uniform diagnostic criteria and data collection procedures.
  • We are also interested in collecting samples from multiplex PD families (with several affected individuals)
  • Help to improve the research in each of the participating institutions
  • Help acquire Institutional Review Board (IRB) and Federal Wide Assurance (FWA) permission to perform international research at all participating sites.
  • Promote the training of researchers by encouraging the exchange of knowledge through annual meetings, website communications, and transitioning researchers between sites.
  • Design and submission of research projects to search for funding both nationally and internationally

DATA COLLECTION


DETERMINED BY MOVEMENT DISORDER SPECIALIST

  • Determination of eligibility and presence/absence of individual elements of the UKPDSBB Criteria
  • Presence of dyskinesias & rating of intensity/duration
  • Hoehn & Yahr Stage
  • Presence/absence of dementia
  • Presence/absence of psychosis

  • COLLECTED BY NURSE COORDINATOR

  • Age at onset (of first symptoms from UKPDSBB Criteria, Step 1)
  • Focused past medical history
  • Age at first diagnosis of PD
  • Self-administered questionnaire on lifetime smoking, caffeine, & non-steroidal anti-inflammatory drug use
  • Presenting symptom (of parkinsonism) & location
  • Ancestry of subject & parents
  • Current/previous antiparkinsonian medications & duration of therapy
  • Family history of PD & pedigree diagram