Underrepresented Populations Working Group

The Underrepresented Populations working group, facilitates increased representation and analysis of genetic factors associated with Parkinson’s disease in non-European populations.

About the 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.

Meet the leads & co-leads

Lead

Ignacio (Nacho) F. Mata, PhD

Cleveland Clinic | USA

Co-Lead

Shen-Yang Lim

University of Malaya | Malaysia

Co-Lead

Olaitan Okunoye

University College London | Nigeria

Co-Lead

Artur F. Schumacher-Schuh, MD, PhD

Universidade Federal do Rio Grande do Sul / Hospital de Clínicas de Porto Alegre | Brazil

Meet the participants

Member

Yared Z. Zewde

University of California San Francisco | USA

Member

Vida Obese

Queensquare Institute of Neurology | Ghana

Member

Soraya Bardien, PhD

Stellenbosch University | Cape Town, South Africa

Member

Roopa Rajan

All India Institute of Medical Sciences | India

Member

Rejko Krüger

University of Luxembourg | Luxembourg

Member

Rauan Kaiyrzhanov

University College London | Kazakhstan

Member

Prashanth Lingappa Kukkle

Manipal Hospital | India

Member

Nor Azian Abdul Murad, PhD

UKM Medical Molecular Biology Institute (UMBI) | Malaysia

Member

Nobutaka Hattori, MD, PhD

Juntendo University faculty of medicine | Japan

Member

Njideka Okubadejo

University of Lagos | Nigeria

Member

Muhammad Umair

King Abdullah International Medical Research Center | Saudi Arabia

Member

Mie Rizig

University College London | UK

Member

Mario Cornejo-Olivas, MD

Universidad Científica del Sur, Instituto Nacional de Ciencias Neurológicas | Lima, Peru

Member

Manu Sharma

University of Tübingen | Germany

Member

Manabu Funayama, PhD

Juntendo University | Japan

Member

Germaine Hiu-Fai Chan

Queen Elizabeth Hospital | Hong Kong

Member

Azlina Ahmad-Annuar

University of Malaya | Malaysia

Member

Albert Akpalu, MD,MSc

University of Ghana Medical School | Accra, Ghana

Member

Alastair Noyce, MD, PhD

Queen Mary University of London | London, UK

Member

Alexis Brice, MD

Institut du Cerveau (ICM) | France

Member

Benjamin Pizarro Galleguillos, MD

Universidad de Chile | Santiago, Chile

Member

Hirotaka Iwaki, MD, PhD

Data Tecnica International | USA

Member

Joshua Shulman

Baylor College of Medicine / Texas Children's Hospital | USA

Member

Kin Ying Mok, PhD

Univeristy College London | UK

Member

Marcelo Miranda

Fundación Diagnosis | Chile

Member

Naomi Louie, MPH

Michael J. Fox Foundation for Parkinson's Research | Bellevue, USA

Member

Ruey-Meei Wu, MD, PhD

National Taiwan University Hospital | Taiwan

Member

Sara Bandres-Ciga, PharmD,PhD

National Institutes of Health | USA

Member

Shoaib Ur-Rehman

University of science and technology Bannu | Pakistan

Member

Tao Xie, MD, PhD

University of Chicago | USA

Member

Henry Houlden

University College London | UK

Member

Mohamed Salama

The American University in Cairo | Egypt

Member

Inas Elsayed

Faculty of pharmacy University of Gezira | Sudan

Member

Miguel E. Rentería, PhD

QIMR Berghofer Medical Research Institute | Brisbane, Australia

Member

Karen Nuytemans, PhD

University of Miami Miller School of Medicine | USA

Member

Bashayer Al Mubarak, PhD

King Faisal Specialist Hospital and Research Center | Saudi Arabia

Milestones

Completed

  • Published an article about underrepresented populations in PD genetics research

Active

  • Conduct first multi-ancestry genome-wide meta-analysis in PD
  • Increasing URP data collection efforts
  • Preliminary GWAS analysis in East Asia and Africa
  • Supporting training opportunities to researchers from URPs and engaging with trainee network
  • 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

Not Started

  • Conduct a survey about unprofessional peer review and barriers to publish