Underrepresented Populations Working Group

Lack of diversity is one of the critical challenges that the genetics field must overcome. To date, approximately 80% of all genome-wide association studies (GWASs) have been conducted in non-Hispanic Europeans. For example, Asians constitute 60% of the world population, but are represented only in 10% of the samples investigated. Latinos represent less than 0.5%, and for Africans, the number is even lower. These differences limit our insights into disease mechanisms and, importantly, create inequalities when newer diagnostic and therapeutic approaches are developed based on genetic information.

Our mission is to join forces to increase representation and decipher the genetic factors associated with Parkinson’s disease (PD) in non-European populations. We will promote recruitment of persons with PD and ethnically matched healthy controls from underrepresented populations. To add to the Monogenic working group’s efforts, we will identify multiplex families from underrepresented populations, and together with the Data Analysis working group we will help develop the analysis tools necessary to deal with our different and complex genetic admixture. We aim to build resources in the participating countries, including physical resources such as biobanks and training opportunities for local junior researchers. Alongside this we will include researchers, especially junior, to be actively involved in all analyses.

You can also find more information about each of the initiatives working with the working group on the IPDGC-Africa website, the IPDGC-East-Asia website, and the LARGE-PD (Latin America) website.

Working Group
Ignacio Fernandez Mata, PhD
Biography
Lead, Underrepresented Populations

Ignacio Fernandez Mata, PhD

Cleveland Clinic | USA
Shen-Yang Lim, MBBS, MD, FRACP, FASc
Biography
Co-lead, Mongenic Portal Development & Underrepresented Populations East Asia

Shen-Yang Lim, MBBS, MD, FRACP, FASc

University of Malaya | Malaysia
Olaitan Okunoye, MSc,
Biography
Co-lead, Underrepresented Populations Africa

Olaitan Okunoye, MSc,

Africa University College London | United Kingdom
Artur Francisco Schumacher Schuh, MD, PhD
Biography
Co-lead, Underrepresented Populations Latin America

Artur Francisco Schumacher Schuh, MD, PhD

Universidade Federal do Rio Grande do Sul | Brazil
Sara Bandres-Ciga, PharmD, PhD
Biography
Co-lead, Training, Networking, and Communication

Sara Bandres-Ciga, PharmD, PhD

National Institutes of Health | USA
Soraya Bardien, PhD
Biography
Working Group Participant

Soraya Bardien, PhD

Stellenbosch University | South Africa
Peter Heutink, PhD
Biography
Lead, Monogenic Data Analysis

Peter Heutink, PhD

German Center for Neurodegenerative Diseases | Germany
Hirotaka Iwaki, MD, PhD
Biography
Co-lead, Complex Disease Cohort Integration

Hirotaka Iwaki, MD, PhD

Data Technica International / National Institutes of Health | USA
Rejko Kruger, MD
Biography
Working Group Participant

Rejko Kruger, MD

Luxembourg Centre for Systems Biomedicine | Luxembourg
Kin Mok, MBBS, FRCP(E), PhD
Biography
Working Group Participant

Kin Mok, MBBS, FRCP(E), PhD

University College London | United Kingdom
Alastair Noyce, MRCP, PhD
Biography
Lead, Training, Networking, and Communication

Alastair Noyce, MRCP, PhD

Queen Mary University of London | United Kingdom
Njideka Okubadejo, MBChB, FMCP
Biography
Working Group Participant

Njideka Okubadejo, MBChB, FMCP

University of Lagos | Nigeria
Mie Rizig, MD, PhD
Biography
Working Group Participant

Mie Rizig, MD, PhD

University College London | United Kingdom
Manu Sharma, PhD
Biography
Working Group Participant

Manu Sharma, PhD

University of Tubingen | Germany
Joshua Shulman, MD, PhD
Biography
Working Group Participant

Joshua Shulman, MD, PhD

Baylor College of Medicine | USA
Bernadette Siddiqi
Biography
Working Group Participant

Bernadette Siddiqi

The Michael J. Fox Foundation | USA
Milestones
Progress so far
  • Published an article about underrepresented populations in PD genetics research (ref pmid: 35867623)
  • Published as a preprint the first multi-ancestry genome-wide meta-analysis in PD (ref: doi.org/10.1101/2022.08.04.22278432)
  • Supported ongoing recruitment in Africa, India, Latin America, and among underrepresented populations in the US and UK, as well as supported new initiatives like the Central Asia and Transcaucasia PD initiative (CAT-PD)
  • Started preliminary GWAS analysis in East Asia and Africa
  • Supported the Training Working Group in offering training opportunities to researchers from underrepresented populations and fostered young researchers to engage in the trainee network
Remaining Year 3 Goals
  • Conduct a survey about unprofessional peer review and barriers to publish
  • Identify barriers to genetic testing in countries with predominantly underrepresented populations
  • Encourage URP researchers to submit project analysis proposals to GP2
  • Support underrepresented research groups in recruitment and analysis
  • Identify and engage with new URP sites that are not currently represented in GP2

Contact Us

For any questions or new potential under-represented cohorts please contact: [email protected]