About the T1D Index

With nearly 9 million people living with type 1 diabetes (T1D) across the globe, it is one of the fastest-growing non-communicable conditions today.

The T1D Index is a first of its kind data simulation tool that measures and maps the human and public health impact of T1D. The Index uniquely illuminates the human burden of T1D by highlighting โ€œmissing peopleโ€ and โ€œhealthy years lostโ€ to the condition.

T1D has a profound human, emotional, and financial burden for those who live with it – and that burden is rising rapidly. However, simulations from the T1D Index have identified four key interventions that could change the current trajectory of T1D and its impact on people around the world. The T1D Index helps shine a light on the challenges we face, giving us a chance to act now.

How was the T1D Index developed?

The simulation is informed by 400+ publications around the globe (dating back to 1890) and a global survey of more than 500 endocrinologists. These data sources have been fitted to mathematical and machine-learning models that speak to: 

  • Rates of new cases 
  • The risk of complications and mortality
  • Prevailing standards of medical care

The T1D Index simulations provide the most accurate estimate of T1D currently available with version 1.0 testing to +/- 6 percent against real-world data. This is a significant improvement from leading existing estimates that test to +/- 35 percent against the same data. 

The T1D Index and accompanying research has been published in one of the most trusted medical journals, The Lancet Diabetes and Endocrinology. 

You can dive deeper into the details here:

How will the T1D Index evolve over time?

This work is the basis for a publicly available, open-source model that will be updated annually as further incidence, prevalence, and mortality data become available. In future releases, the Index will expand to include T1Dโ€™s impact on economic costs, mental health, and quality of life. The data will also be broken down at regional and demographic levels.

If you have ideas or data that may improve the T1D Index, please let us know at hello@t1dindex.org and sign up to be involved in future model development.

Whoโ€™s behind the T1D Index?

The Index was developed collaboratively by Breakthrough T1D, Life for a Child, International Society for Pediatric and Adolescent Diabetes (ISPAD), International Diabetes Federation (IDF), and Beyond Type 1.

These organizations represent part of the diverse global diabetes community, and this coalition is committed to working together to expand this partnership.

Our aim is to provide robust, credible data that inspires action and helps save and improve innumerable lives.

Founding T1D Index Partners

Breakthrough T1D is the leading global organization harnessing the power of research, advocacy, and community engagement to advance life-changing breakthroughs for type 1 diabetes (T1D).

Life for a Child supports children and young people living with diabetes in under-resourced communities. They partner with local clinics in 44 countries and work to ensure every young person has access to the insulin and supplies they need. Life for a Childโ€™s vision statement is, โ€œNo child should die of diabetes.โ€

The International Diabetes Federation (IDF) is an umbrella organization of over 240 national diabetes associations in 160 countries and territories. IDF is engaged in action to tackle diabetes from the local to the global level, representing the interests of the growing number of people with diabetes and those at risk.

ISPAD is the International Society for Pediatric and Adolescent Diabetes. The mission of ISPAD is to create a better world for children, adolescents, and young adults with diabetes. Additionally, ISPAD, in partnership with Breakthrough T1D, funds the annual Allan Drash Clinical Fellowship, which gives members based in developing and middle income countries the opportunity to expand their clinical experience in diabetes management.

Beyond Type 1 is a nonprofit organization changing what it means to live with diabetes. Through platforms, programs, resources, and grants, Beyond Type 1 is uniting the global diabetes community and providing solutions to improve lives today.

Other Partners

Foundation Partner

The Leona M. and Harry B. Helmsley Charitable Trust is a global philanthropy organization committed to helping people live better lives today and creating stronger, healthier futures for individuals and communities. 

Founding Corporate Partner

Abbott is a global healthcare leader that helps people live more fully at all stages of life. The companyโ€™s portfolio of life-changing technologies spans the spectrum of healthcare, with leading businesses and products in diagnostics, medical devices, nutritionals, and branded generic medicines.

T1D Index Corporate Sponsor

Lilly has been a global leader in diabetes care since 1923, when they introduced the world’s first commercial insulin. Today Lilly is building upon this heritage by working to meet the diverse needs of people with diabetes and those who care for them. Through research, collaboration and quality manufacturing Lilly strives to make life better for people affected by diabetes and related conditions. Lilly is working to deliver breakthrough outcomes through innovative solutionsโ€”from medicines and technologies to support programs and more.

Global Access Corporate Partner

Vertex is a global biotechnology company that invests in scientific innovation to create transformative medicines for people with serious diseases. The company has multiple approved medicines that treat the underlying cause of cystic fibrosis (CF) โ€” a rare, life-threatening genetic disease โ€” and has several ongoing clinical and research programs in CF. Beyond CF, Vertex has a robust pipeline of investigational small molecule, cell and genetic therapies in other serious diseases where it has deep insight into causal human biology, including sickle cell disease, beta thalassemia, APOL1-mediated kidney disease, pain, type 1 diabetes, alpha-1 antitrypsin deficiency and Duchenne muscular dystrophy.

Global Access Partners

T1D Index Contributors

Mark Barone, PhD

Uroลก Bodanoviฤ‡

Luis Eduardo Calliari, MD

Professor Stephen Colagiuri

Jeremiah B Cooper

Dr Carine de Beaufort
Guest professor, Pediatric Diabetologist โ€“Endocrinologist            
ISPAD President  2020-2022, Luxembourg

Professor Kim Donaghue
The Children’s Hospital at Westmead and University of Sydney

Dr Ileana E Gill
Co-founder Guerreros Azules

Jami Goodman
United States of America

Gabriel Gregory, MD

Ragnar Hanas MD, PhD

Lala Jackson
United States of America

Professor Partha Kar
United Kingdom

Ms Emma Louise Klatman
United Kingdom

George Kwayu
Chairman, Tanzania Diabetes Youth Alliance

Sarah E. Linklater (nรฉe Allan) PhD

Professor Ronald Ma
Hong Kong, China

Professor Dianna Magliano OAM

Domingos Augusto Malerbi MD, PhD

Dr Jayanthi Maniam

Dรญdac Mauricio

Bridget McNulty
Co-founder, Sweet Life Diabetes Community
South Africa

Karla F S Melo, PhD in Endocrinology and Metabolism, Coordinator of the Public Health Department from the Brazilian Diabetes Society, Brazil

Dr Vishwanathan Mohan

Dr Graham Ogle
General Manager, Life for a Child Program
Diabetes NSW, Australia

Fiona Ooi

Professor Trevor J Orchard
United States of America

Christopher C Patterson 
Honorary Professor of Medical Statistics and Epidemiology, Queen’s University Belfast, United Kingdom

Priyanka Rai, MSc

Professor Marian Rewers
United States of America

Tom Robinson
VP Global Access, Breakthrough T1D

Dr Banshi Saboo

Renza Scibilia

Miss Kgabo Thapelo Semenya
South Africa

Ms Jazz Sethi
Founder, Diabetes Foundation

Dr Rachel Swift

Charles Toomey
Co-founder, A4D

Fei Wang PhD

International Diabetes Federation Diabetes Atlas Type 1 Diabetes in Adults Special Interest Group

T1D Index Champions

Henk-Jan Aanstoot, MD, PhD
Pediatrician-diabetologist and clinical research Director Diabeter

Karen Addington
CEO, Breakthrough T1D United Kingdom

Silver Bahendeka, MBChB, MSc, Cert D&E; FRCPI, PhD
Hon Senior Consultant Physician, St. Francis Hospital, Nsambya Kampala
Hon Professor of Medicine, MKPGMS – Uganda Martyrs University, Kampala
Chair, East Africa Diabetes Study Group (EADSG)

Andrew JM Boulton, MD, DSc (Hon), FACP, FICP, FRCP, President, International Diabetes Federation
Chair, EURADIA: Alliance for European Diabetes Research
Professor of Medicine, University of Manchester and Visiting Professor, University of Miami, FL
Consultant Physician, Manchester Royal Infirmary
Past-President, European Association for the Study of Diabetes. United Kingdom

Dr. Roque Cardona-Hernandez

Dr Juliana Chizo Agwu
Consultant Pediatrician in Diabetes and Endocrinology, Sandwell and West Birmingham NHS Trust, United Kingdom

Nanette DeTurk
Breakthrough T1D International
Director Emirita
United States of America

Mark Fischer-Colbrie
Former Chair, Breakthrough T1D International and volunteer
Unites States of America

Claudia Graham, PhD, MPH
Chair of the Advocacy & Impact Committee
Member of the International Board of Directors, Breakthrough T1D, United States of America

Dr Kerry Kalweit
South Africa

Aaron Kowalski, PhD
CEO, Breakthrough T1D International

Jamie Kurtzig, Breakthrough T1D Global Access Volunteer & Stanford Student Researcher

Nupur Lalvani
Founder Director Blue Circle Diabetes Foundation, India

Michael Lee
Breakthrough T1D International
Director Emirita
United States of America

Sylvia Lion
Conseillรจre, responsable projets UNFM
Conseillรจre, responsable projets SFD
ISPAD Corporate Affairs Advisor
PCDE  Advisor

Dr Chantal Mathieu, PhD, Endocrinology Leuven Belgium

Sina Mollaei
Undergraduate student at Stanford University
United States of America

Vivian Nabeta
Founder & Executive Director
Sonia Nabeta Foundation
United States of America

Snehal Nandagawli

Ann Sofie Westh Olsen, PhD
Global Access to Care Lead
Novo Nordisk

Dorota Pawlak, PhD
Chief Scientific Officer Breakthrough T1D Australia and Director Australian T1D Clinical Research Network, Australia

Margery Perry
Past Chair of Research, Breakthrough T1D
United States of America

Dave Prowten
CEO, Breakthrough T1D Canada

Derek Rapp
Former CEO, Breakthrough T1D International and volunteer
United States of America

Lorne Shiff
Breakthrough T1D International
Director Emirita
United States of America

Efrat Tisch
CEO, Breakthrough T1D Israel

Bart Torbeyns
Executive Director, EUDF

Francesca Ulivi
CEO, Fondazione Italiana Diabete

Beatrice Vetter, PhD
Deputy Director NCDs, FIND

David Walton, Chief Executive Officer
T1D Exchange, United States of America

Ingrid Wiechers
CEO, Breakthrough T1D Netherlands

Mike Wilson OAM
CEO, Breakthrough T1D Australia

If you or your organization are interested in becoming a T1D Index Champion or contributing to future releases, please reach out to us at hello@t1dindex.org