Here are the answers
What the T1D Index is
Contact us
Partners & organizations
Future of T1D Index
How the model works
Symbols and terminology
Advocacy resources
What the T1D Index is
The T1D index is a tool that can help reveal the true impact of T1D. It provides the first-ever comprehensive global picture of T1D. Its data details the presence and growth of T1D in every country across the globe, noting the total number of healthy years and futures it has stolen along the way. The T1D Index aims to bring global attention to T1D to inspire action and help save and improve lives. As the first measuring system of its kind, The T1D Index provides a rare perspective into the data behind T1D and specific strategies to save the countless lives T1D will impact if we don't act now. This platform features three main pages that give a comprehensive overview of T1D situation around the globe:
Global Impact
This page explains the impact of T1D on the population. It covers incidence, prevalence, levels of diagnosis and access to care around the world. You can explore and compare statistics across the total population to see T1D data across years, regions, and demographics.
Healthy Years
We show how care impacts healthy life expectancy and the healthy years lost to the burden of T1D. Explore and compare life expectancy, levels of care, and healthy years lost to complications and treatment and restored across years, regions, and demographics.
Simulator
The simulator is a groundbreaking tool that allows you to explore the global and segment-specific impact of diagnosis rates and care levels, offering powerful insights into the effects of interventions across different populations.
Contact us
If you have data that may assist the T1D Index or want to be involved in future model development, contact us:
hello@tidindex.orgPartners & organizations
The T1D Index represents an ambitious global coalition of organizations. Breakthrough T1D, Life for a Child, ISPAD, and International Diabetes Federation are some of the key organizations uniting to highlight and support the millions of people living with T1D around the world. Relying on a collaborative approach and a vast network of partners, The T1D Index is dedicated to bringing global attention to T1D. It aims to inspire action and help save and improve innumerable lives. 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
Our founding partners
Breakthrough T1D
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
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 Child’s vision statement is, “No child should die of diabetes.”
The International Diabetes Federation (IDF)
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
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.
Other partners
Founding 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 company’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 solutions—from medicines and technologies to support programs and more.
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) — a rare, life-threatening genetic disease — 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.
Partners
T1D Index Contributors
Mark Barone
PhD
Brazil
QuoteMs Emma Louise Klatman
United Kingdom
QuoteProfessor Trevor J Orchard
MD, M Med Sci, FAHA, FACE
United States of America
Co-author
QuoteUroš Bodanović
Serbia
George Kwayu
Chairman, Tanzania Diabetes Youth Alliance
Tanzania
QuoteChristopher C Patterson
Honorary Professor of Medical Statistics and Epidemiology, Queen’s University
Belfast, United Kingdom
QuoteLuis Eduardo Calliari
MD
Brazil
QuoteSarah E. Linklater (née Allan)
PhD
Canada
Co-author
QuotePriyanka Rai
MSc
Australia
Co-author
QuoteProfessor Stephen Colagiuri
Australia
Co-author
QuoteProfessor Ronald Ma
Hong Kong, China
Co-author
QuoteProfessor Marian Rewers
MD PhD
United States of America
QuoteJeremiah B Cooper
Liberia
Dr Carine de Beaufort
Guest professor, Pediatric Diabetologist–Endocrinologist, ISPAD President 2020-2022
Luxembourg
Co-author
QuoteProfessor Dianna Magliano
OAM
Australia
Co-author
QuoteTom Robinson
Australia
Co-author
QuoteDomingos Augusto Malerbi
MD, PhD
Brazil
QuoteProfessor Kim Donaghue
The Children’s Hospital at Westmead and University of Sydney
Australia
Co-author
QuoteDr Jayanthi Maniam
Australia
Co-author
QuoteDr Banshi Saboo
India
QuoteDr Ileana E Gill
Co-founder Guerreros Azules
Venezuela
QuoteDídac Mauricio
Spain
Renza Scibilia
Australia
QuoteJami Goodman
United States of America
QuoteBridget McNulty
Co-founder, Sweet Life Diabetes Community
South Africa
QuoteMiss Kgabo Thapelo Semenya
South Africa
QuoteGabriel Gregory
MD
Australia
Co-author
Dr Karla F S Melo
PhD in Endocrinology and Metabolism, Coordinator of the Public Health Department from the Brazilian Diabetes Society
Brazil
QuoteMs Jazz Sethi
Founder, Diabetes Foundation
India
QuoteDr Ragnar Hanas
MD, PhD
Sweden
QuoteDr Vishwanathan Mohan
India
QuoteDr Rachel Swift
Australia
QuoteLala Jackson
United States of America
QuoteDr Graham Ogle
General Manager, Life for a Child Program Diabetes NSW
Australia
Co-author
QuoteCharles Toomey
Co-founder, A4D
Thailand
QuoteProfessor Partha Kar
MD FRCP
United Kingdom
QuoteFiona Ooi
Malaysia
QuoteFei Wang
PhD
Australia
Co-author
QuoteInternational Diabetes Federation Diabetes Atlas Type 1 Diabetes in Adults Special Interest Group – Jessica Harding (Emory University), Luke Wander (University of Washington), Xinge Zhang (Chinese University of Hong Kong), Xia Li (Central South University), Suvi Karuranga (International Diabetes Federation), Hongzhi Chen (Central South University), Hong Sun (International Diabetes Federation), Yuting Xie (Central South University), Richard Oram (Exeter University), Dianna Magliano (Baker Heart and Diabetes Institute), Zhiguang Zhou (Central South University), Alicia Jenkins (University of Sydney), Ronald Ma (Chinese University of Hong Kong).
QuoteT1D Index Champions
Dr Henk-Jan Aanstoot
MD, PhD Pediatrician-diabetologist and clinical research Director Diabeter
Netherlands
QuoteDr Kerry Kalweit
South Africa
QuoteMargery Perry
Past Chair of Research, Breakthrough T1D
United States of America
QuoteKaren Addington
CEO, Breakthrough T1D UK
United Kingdom
QuoteAaron Kowalski
PhD CEO, Breakthrough T1D International
QuoteDave Prowten
Former CEO, Breakthrough T1D Canada
QuoteProf 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)
QuoteJamie Kurtzig
Breakthrough T1D Volunteer & Stanford Student Researcher
QuoteDerek Rapp
Former CEO, Breakthrough T1D International and volunteer
United States of America
QuoteNupur Lalvani
Founder Director Blue Circle Diabetes Foundation
India
QuoteLorne Shiff
Breakthrough T1D International Director Emirita
United States of America
QuoteProf Andrew JM Boulton
MD, DSc (Hon), FACP, FICP, FRCP, Former 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
QuoteMichael Lee
Breakthrough T1D International, Director Emirita
United States of America
QuoteEfrat Tisch
CEO, Breakthrough T1D Israel
Sylvia Lion
Conseillère, responsable projets UNFM, Conseillère, responsable projets SFD, ISPAD Corporate Affairs Advisor, PCDE Advisor
QuoteBart Torbeyns
Executive Director, EUDF
Belgium
QuoteDr. Roque Cardona-Hernandez
Spain
QuoteDr Chantal Mathieu
PhD, Endocrinology
Leuven, Belgium
QuoteFrancesca Ulivi
CEO, Fondazione Italiana Diabete
Italy
QuoteDr Juliana Chizo Agwu
Consultant Pediatrician in Diabetes and Endocrinology, Sandwell and West Birmingham NHS Trust
United Kingdom
QuoteSina Mollaei
Undergraduate student at Stanford University
United States of America
QuoteBeatrice Vetter
PhD, Deputy Director NCDs, FIND
Switzerland
QuoteNanette DeTurk
Breakthrough T1D International, Director Emirita
United States of America
QuoteVivian Nabeta
Founder & Executive Director Sonia Nabeta Foundation
United States of America
QuoteDavid Walton
Chief Executive Officer T1D Exchange
United States of America
QuoteSnehal Nandagawli
India
QuoteIngrid Wiechers
Former CEO, Breakthrough T1D Netherlands
Mark Fischer-Colbrie
Former Chair, Breakthrough T1D International and volunteer
Unites States of America
QuoteAnn Sofie Westh Olsen
PhD, Global Access to Care Lead Novo Nordisk
Denmark
QuoteMike Wilson
OAM Former CEO, JDRF Australia
QuoteClaudia Graham
PhD, MPH, Chair of the Advocacy & Impact Committee, Member of the International Board of Directors, Breakthrough T1D
United States of America
QuoteDr Dorota Pawlak
PhD, Chief Scientific Officer JDRF Australia and Director Australian T1D Clinical Research Network
Australia
QuoteSydney Yovic
CEO, JDRF Australia
QuoteFuture of T1D Index
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 T1D’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 contact us and sign up to be involved in future model development.
How the model works
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.
Conceptual outline of core model used the T1D Index simulator
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:
Symbols and terminology
Here we list and explain all the symbols and terminology we use around the T1D Index:
People living with T1D
Prevalence
Number of living people with T1D. Estimated through an epidemologic model (Markov) using population, incidence, and mortality as inputs.
People newly diagnosed with T1D
Incidence
Number of people receiving a T1D diagnosis for a specific year. This is estimated through extrapolation of reported incidence data in youth (age below 20) and adult cohorts.
Basic care
Minimal care
Basic care consists of a simple insulin regimen with minimal or no self-blood glucose monitoring, HbA1c testing, and diabetes education.Reports of basic care apply to people living with T1D (prevalence) and people newly diagnosed with T1D (incidence).
Advanced care
Non-minimal care
Advanced care is defined as an insulin regimen that is basal-bolus or, if possible, by continuous subcutaneous infusion with an insulin pump. This level of care is also characterized by multiple tests per day up to continuous glucose monitoring. Reports of advanced care apply to People living with T1D (prevalence) and People newly diagnosed with T1D (incidence).
Advanced care levels
The T1D Index accounts for a ‘Four Lever’ intervention system: Timely Diagnosis, Insulin & Strips Self-Management, Pumps & CGMs Self-Management, and Preventions & Cures. In the Simulator, each geography assumes one of these four levels as their ‘Default’ type of advanced care.
Lives lost to T1D
Deaths
Number of T1D-associated premature deaths for a given year, calculated from extrapolated Standard Mortality Rates.
Missing people
Missing prevalence
Number of people who would be alive with T1D if their mortality matched general population rates (or due to reduced diagnosis) derived from an epidemiologic (Markov) model.
Diagnosed T1D
Mortality in diagnosed people with T1D are based on a Standard Mortality Rate (SMR) relative to background mortality. Referenced in Lives lost and Missing people.
Undiagnosed T1D
Rates of deaths from non-diagnosis were derived from regional estimates from health professionals provided in a JDRF/ISPAD 2020 survey. Referenced in Lives lost and Missing people.
Healthy life expectancy
Health-adjusted life years
Number of years of disability-free life expectancy projected for a person diagnosed with T1D at age 10.
Healthy years lost
Disability adjusted life years
Sum of all years of life spent in treatment or ill-health (averaged from the potential impact of eight different complications).
Healthy years restored
Healthy life years refers to interventions associated to different care levels that can extend healthy life expectancy. ‘Healthy years restored’ is calculated as the difference in healthy life expectancy between people without access to care and people with access to different types of care.
Years lost
Health-adjusted life years lost
Total years of life lost due to premature mortality for a person with T1D diagnosed at age 10, compared to the life expectancy of the average person without T1D in the same demographic cohort.
Advocacy resources
To advocate for change, you’ll need a clear and concise plan. Understanding whom you need to influence, how to do it, and the best way to work are all vital for developing an advocacy strategy. The Diabesties Advocacy Toolkit provided below is aimed at helping advocates drive positive change and make an impact by deploying best practices for advocacy as outlined in the kit. The Life for a Child Diabetes and Human Rights toolkits are designed as a practical resource to help people use the human rights approach when advocating for increased provision of T1D care. This toolkit is available in English, Spanish, and French.
Change the numbers, change the story
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