Mit weltweit fast 9 Millionen Menschen, die mit Typ-1-Diabetes (T1D) leben, gehört sie zu den am schnellsten wachsenden nicht-übertragbaren Krankheiten unserer Zeit.
Der T1D-Index ist das erste Datensimulationstool seiner Art, das die Auswirkungen von T1D auf die menschliche und öffentliche Gesundheit misst und abbildet. Der Index beleuchtet auf einzigartige Weise die Bürde, die T1D für die Menschheit darstellt, indem er die durch die Krankheit „fehlenden Menschen“ und die „verlorenen Jahre in Gesundheit“ aufzeigt.
T1D stellt eine große menschliche, emotionale und finanzielle Belastung für die Betroffenen dar – und diese Belastung wird immer größer. Durch Simulationen auf der Grundlage des T1D-Index wurden jedoch vier wichtige Interventionsmöglichkeiten identifiziert, die die derzeitige Entwicklung von T1D und deren Auswirkungen auf Menschen auf der ganzen Welt verändern könnten. Der T1D-Index trägt dazu bei, die Herausforderungen, vor denen wir stehen, ins rechte Licht zu rücken, und gibt uns die Chance, jetzt zu handeln.
Wie wurde der T1D-Index entwickelt?
Die Simulation stützt sich auf über 400 Veröffentlichungen aus aller Welt (die bis ins Jahr 1890 zurückreichen) und eine weltweite Umfrage unter mehr als 500 Endokrinologen. Diese Datenquellen wurden mit mathematischen und maschinellen Lernmodellen verknüpft, die Aussagen treffen über:
Raten von Neuerkrankungen
Komplikations- und Sterberisiko
Vorherrschende Standards der medizinischen Versorgung
Die Simulationen des T1D-Index stellen die genaueste derzeit verfügbare T1D-Einschätzung dar. Bei Version 1.0 beträgt die Abweichung von realen Daten in Tests bei +/- 6 Prozent. Dies ist eine erhebliche Verbesserung im Vergleich zu den bisher führenden Schätzungen, die im Vergleich zu denselben Daten eine Genauigkeit von +/- 35 Prozent aufweisen.
Der T1D-Index und die begleitende Forschung wurden in einer der vertrauenswürdigsten medizinischen Fachzeitschriften, The Lancet Diabetes and Endocrinology, veröffentlicht.
Wie entwickelt sich der T1D-Index im Laufe der Zeit weiter?
Diese Arbeit bildet die Grundlage für ein öffentlich zugängliches Open-Source-Modell, das jährlich aktualisiert wird, sobald weitere Daten zu Inzidenz, Prävalenz und Mortalität verfügbar werden. In zukünftigen Versionen wird der Index um den Einfluss von T1D auf die wirtschaftlichen Kosten, die psychische Gesundheit und die Lebensqualität erweitert. Die Daten werden auch auf regionaler und demografischer Ebene aufgeschlüsselt werden.
Wenn Sie Ideen oder Daten haben, die den T1D-Index verbessern könnten, teilen Sie uns diese bitte unter hello@t1dindex.org mit und melden Sie sich an, um an der Entwicklung zukünftiger Modelle mitzuwirken.
Wer steckt hinter dem T1D-Index?
Der Index wurde gemeinsam von JDRF, Life for a Child, der International Society for Pediatric and Adolescent Diabetes (ISPAD), der International Diabetes Federation (IDF) und Beyond Type 1 entwickelt.
Diese Organisationen repräsentieren einen Teil der vielseitigen internationalen Diabetes-Gemeinschaft. Ziel ihres Zusammenschlusses ist es, diese Partnerschaft auszubauen.
Unser Ziel ist es, fundierte und seriöse Daten zu liefern, die zum Handeln anregen und dazu beitragen, dass unzählige Leben gerettet und verbessert werden.
Gründungspartner von T1D-Index
JDRF ist die weltweit führende Organisation, die durch Forschung, Interessenvertretung und Bürgerengagement lebensverändernde Durchbrüche bei Typ-1-Diabetes (T1D) erzielt.
“As a member of the T1D community, I know many are not as fortunate as I am to have the resources necessary to live a healthy and fulfilled life. This is why I am so proud that significant progress has been made to understand T1D’s global impact through the T1D Index. We are calling on government and public health decision makers throughout the world to utilize the tool to identify and implement interventions that can change the trajectory of T1D.”
Life for a Child unterstützt Kinder und junge Menschen, die mit Diabetes in unterversorgten Gemeinschaften leben. Die Organisation arbeitet mit lokalen Kliniken in 44 Ländern zusammen und setzt sich dafür ein, dass jeder junge Mensch Zugang zu dem notwendigen Insulin und anderen Hilfsmitteln hat. Die Vision von Life for a Child lautet: „Kein Kind sollte an Diabetes sterben.“
“It is critical to know the number of people with T1D so that sufficient resources are allocated and advocacy efforts optimized. In this regard, the T1D Index is a truly novel initiative with enormous promise. It builds on the modeling work developed by Life for a Child and the University of Pittsburgh, as well as the work behind the IDF Atlas, a global survey by ISPAD, and various other data sources. JDRF’s inputs of a larger vision, advanced statistical methods and new ways of looking at the situation, have led to a robust method of generating information on current and projected future situations concerning T1D at all ages for all countries. The Index will also be able to model the impact of proposed interventions. The open-source nature greatly enhances the usability. Life for a Child is providing extensive technical guidance and support, and will continue to do this as the Index develops.”
Die International Diabetes Federation (IDF) ist ein Dachverband von über 240 nationalen Diabetesverbänden in 160 Ländern und Territorien. Die IDF setzt sich auf lokaler bis globaler Ebene für die Bekämpfung von Diabetes ein und vertritt die Interessen der wachsenden Zahl von Betroffenen und Gefährdeten.
“More than 100 years have passed since the first successful use of therapeutic insulin. It shames the world that early diagnosis and access to appropriate standards of care are still not universally achieved. Providing the evidence is key to helping the global diabetes community to raise awareness and demand action to bring about the increased investment in access, treatment, and prevention that is required.
The launch of the Index is timely and welcome. It places an innovative tool in the hands of diabetes advocates everywhere. It will help reframe the argument around access to care for people living with T1D and draw attention to the significant disparities that continue to exist globally.
The International Diabetes Federation (IDF) is delighted to have contributed to the development of the Type 1 Diabetes Index and will support its promotion and further development to make the case for uninterrupted access to affordable insulin, along with the technologies and education that support successful insulin therapy for all people living with T1D.”
ISPAD ist die Internationale Gesellschaft für Diabetes im Kindes- und Jugendalter. Die Aufgabe von ISPAD besteht darin, eine bessere Welt für Kinder, Jugendliche und junge Erwachsene mit Diabetes zu schaffen. Darüber hinaus finanziert die ISPAD in Zusammenarbeit mit JDRF das jährliche Allan Drash Clinical Fellowship, das Mitgliedern in Entwicklungs- und Ländern mit mittlerem Einkommen die Möglichkeit gibt, ihre klinische Erfahrung im Diabetesmanagement zu vertiefen.
“The T1D Index is a powerful resource. It provides the metrics on type 1 diabetes to advocate and drive change with our partners and the community. The index highlights the disparities and needs of those with T1D around the world. Lives are lost, and days lost due to diabetes, its burden of care and its complications. ISPAD, the International Society for Pediatric and Adolescent Diabetes with a global membership of over 1,100 members in 107 countries, has been delighted to work on this project. It has developed and enabled the survey “The Global State of T1D” with JDRF and LFAC, contributing to the numbers with diabetes, the numbers undiagnosed and thus lost; and the time lost to type 1 diabetes and its care in our member countries. We look forward to the next phase of action with the T1D Index with our partners.”
Beyond Type 1 ist eine gemeinnützige Organisation, die das Leben mit Diabetes verändert. Durch Plattformen, Programme, Ressourcen und Zuschüsse bringt Beyond Type 1 die weltweite Diabetes-Gemeinschaft zusammen und bietet Lösungsansätze, um im Hier und Jetzt Menschenleben zu verbessern.
“The T1D Index is the first measuring system that provides a detailed, global type 1 diabetes assessment. This game-changing information will lead to a greater understanding of type 1 diabetes and more impactful solutions that address the specific needs of each country.”
Andere Partner
Gründungspartner
Der Leona M. and Harry B. Helmsley Charitable Trust ist eine weltweit tätige Philanthropie-Organisation, die sich dafür einsetzt, dass Menschen ihr Leben im Hier und Jetzt verbessern und eine stärkere, gesündere Zukunft für Individuen wie Gemeinschaften schaffen.
“In too many places, T1D is an invisible disease, not on the radar of the healthcare community and often diagnosed only when it’s too late. The T1D Index is an important step in adding visibility to T1D, and offering a base on which to build data-driven interventions that can better support the T1D community in low- and middle-income countries.”
Unternehmenspartner bei der Gründung
Abbott gehört zu den weltweit führenden Unternehmen im Gesundheitswesen und verhilft Menschen in allen Lebensphasen zu einem erfüllten Leben. Sein Portfolio an lebensverändernden Technologien erstreckt sich über die gesamte Bandbreite im Gesundheitswesen, darunter führende Unternehmungen und Produkte in den Bereichen Diagnostik, Medizintechnik, Nahrungsergänzungsmittel und generische Markenarzneimittel.
„The best healthcare solution is the one that helps the most people. New data and insights generated from the T1D Global Index show how early access to the latest technologies, such as FreeStyle Libre continuous glucose monitoring systems, can help people living with Type 1 diabetes live a longer, fuller, and healthier life.“
T1D-Index-Unternehmenssponsor
Lilly gehört bereits seit 1923, als sie das erste kommerzielle Insulin der Welt auf den Markt brachte, zu den weltweit führenden Unternehmen in der Diabetesbehandlung. Heute baut Lilly auf diesem Erbe auf und setzt sich dafür ein, die vielfältigen Bedürfnisse von Menschen mit Diabetes und denen, die sich um diese Menschen kümmern, zu erfüllen. Durch Forschung, Zusammenarbeit und hochwertige Fertigung strebt Lilly danach, das Leben von Menschen zu verbessern, die von Diabetes und damit verbundenen Krankheiten betroffen sind. Lilly setzt sich dafür ein, durch innovative Lösungen bahnbrechende Ergebnisse zu erzielen – von Medikamenten und Technologien bis hin zu Unterstützungsprogrammen und mehr.
„Lilly is a proud supporter of JDRF’s Global T1D Index, as we collaborate to help people around the globe live longer, healthier lives. The Index has the potential to revolutionize the diagnosis and treatment of Type 1 Diabetes by substantially improving our understanding of the prevalence and incidence of Type 1 – and using that data to save millions of lives. In developed countries, this means improving access to care, increasing clinical trial diversity, and advancing research, all priorities Lilly shares. This platform has particular promise in resource-limited countries by improving diagnosis, promoting improved, integrated care and advancing affordability across diabetes care. Lilly is committed to these goals through programs such as our long-term partnership with Life for a Child to build sustainable diabetes care models for vulnerable populations. We look forward to working with JDRF and T1D Index partners to advance this vision, ensuring no child or individual dies of diabetes no matter where they live.“
Unternehmenspartner für Einsätze auf der ganzen Welt
Vertex ist ein weltweit tätiges Biotechnologieunternehmen, das in wissenschaftliche Innovationen investiert, um innovative Medikamente für Menschen mit schweren Krankheiten zu entwickeln. Das Unternehmen verfügt über mehrere zugelassene Medikamente, die die Ursache von Mukoviszidose (CF) – einer seltenen, lebensbedrohlichen genetischen Erkrankung – behandeln. Es verfügt über mehrere laufende klinische und forschungsbezogene Programme für CF. Neben Mukoviszidose verfügt Vertex über eine solide Pipeline von niedermolekularen, zellulären und genetischen Prüfpräparaten für andere schwerwiegende Krankheiten, bei denen das Unternehmen umfassende Erkenntnisse über die kausale Biologie des Menschen besitzt, darunter Sichelzellenanämie, Beta-Thalassämie, APOL1-vermittelte Nierenerkrankungen, Schmerzen, Typ-1-Diabetes, Alpha-1-Antitrypsinmangel und Duchenne-Muskeldystrophie.
“Vertex is proud to support JDRF’s Global Access Initiative, including today’s launch of the Global T1D Index. For far too long, our understanding about the extent and impact of type 1 diabetes has been limited due to incomplete or inaccurate data. The launch of the T1D Index is a pivotal moment for the T1D community and will enable and inspire action to improve the lives of people with T1D throughout the world.”
“Access to diabetes care in Brazil has improved a lot in the past two decades, but the T1D Index helps us to see that there is still room for improving a lot, with equitable access to medicines and supplies associated to trained multidisciplinary healthcare teams and structured diabetes education.”
„The World Diabetes Foundation is a leading global funder of diabetes prevention and care projects in low- and middle-income countries. Our vision is to alleviate human suffering related to diabetes among those in greatest need – since 2002, we have provided 182 million euros in funding to 584 partnership projects in 119 countries. Many of our projects have focused on type 1 diabetes and we are currently supporting children with type 1 diabetes through the Changing Diabetes in Children Programme in eight countries along with other type 1-focused projects. Through our work and experience we fully recognise the need for improved data on patients with type 1 diabetes and therefore welcome the T1D Index and look forward to engaging with JDRF and other key stakeholders on these issues.“
„We are delighted to be able to contribute to the T1D index. I led the work on the recent systematic review on incidence of type 1 diabetes in adults for the IDF Diabetes Atlas. This highlighted the paucity of data on type 1 diabetes in adults, as well as the surprisingly high rates in late adulthood. The T1D index builds on the data collected from our systematic review, and provides a comprehensive estimate of the global burden of type 1 diabetes in different parts of the world. The T1D index highlights the urgent need to better identify adults presenting with diabetes who in fact have underlying T1D. It will no doubt be an invaluable resource for healthcare professionals as well as health organizations for advocacy and healthcare planning.“
“Data from the T1D index will demonstrate to country decision makers how better access to diagnostics and self-monitoring tools can save health systems money and improve quality of life for people living with diabetes.”
„The availability of the Type 1 Diabetes (T1D) Index is a wake-up call for the Low and Middle Income Countries (LMIC) that now there is a rich resource of data and tools to handle the epidemiology and quality management of T1D in these countries.“
“The Brazilian Diabetes Society considers the T1D Index a milestone in the knowledge of T1D epidemiology worldwide. The information on real numbers of people with T1D and days/lives lost to diabetes will bring awareness and allow the development of policies aimed to reduce the current discrepancies and to improve the quality of diabetes care offered today.”
„I was very proud to be able to share my expertise on diabetes and particularly type 1 diabetes in Africa with the team that developed the TD1 index, which is an extraordinary tool. The team was also able to use our published work on the prevalence and incidence of T1D in Mali to enrich T1D.“
„Data helps paint pictures – vivid pictures that are easy to understand and connect with. The T1D Index is bringing to life – finally! – the challenges that people with Type 1 diabetes face all over the world. As a South African with Type 1, I’m excited to see how this can advance our advocacy efforts so that we can improve the lives of people with Type 1 in SA.“
„Taking the first step, creating something from scratch, going from zero to one – is always the most challenging. What it yields is a foundation that others can build on and drive exponential growth. This is what we strongly believe at Diabesties, and I’m excited to see the same principle in action with the T1D Index. It is a much needed development that would allow governments, support organizations and broader stakeholders, to accurately understand the urgency that Type 1 Diabetes requires globally. As organizations and people living with the condition, we have continuously tried to raise the profile of T1D, but were missing this crucial piece of evidence. The T1D index captures poignant and powerful data which outlines key issues and metrics. I am confident that we would be able to use this data in multiple ways to improve the quality AND quantity of life for those living with T1D. The index not only helps understand the reality of disparity in access, but also serves as a tool to influence policy that can help make a meaningful and sustainable change. This comprehensive document is a major resource for the entire community and we at Diabesties, are grateful to be partners in this grand pursuit.“
“I wish to congratulate the authors of the T1D Index. This is the first such compilation internationally and shows the huge burden of type 1 diabetes in different parts of the world. I am particularly concerned that India has one of the largest numbers of T1D, both below, as well as, above 20 years of age. It is also worrying that the remaining life expectancy in those with T1D in India is only 24 years, compared to 69 years in Japan and 67 years in Australia. This points to the need for improving the control of T1D in developing countries like India”.
“The T1D Index permits to finally understand and act on the challenges faced by people with type 1, their families, and communities globally and by country. I expect to see advocate and decision makers using it broadly to immediately start to improve the critical T1D situation.”
„EUDF is proud to support the launch of the T1D Index. The T1D Index measures the human and public health impact of the T1D crisis in every country across the globe. EUDF will use these data and insights from the T1D index in our advocacy work with European policy makers. Greater awareness of the impact of T1D will help change the lives of people with T1D.“
„The T1D Index is a unique endeavor and the need of the hour to highlight type 1 diabetes as a global issue. It brings together T1D stakeholders worldwide and presents an opportunity to raise awareness in a unified voice. Together, we’re stronger. And this rings true especially in our mission to improve the quality of life for people living with diabetes worldwide.“
„I was very excited to be involved in the generation of the T1D Index. Understanding the burden of type 1 diabetes for the world to date has been challenging. Such information is crucial, not only to increase the awareness of type 1 diabetes, but also to inform public health policy, improve delivery of care and ultimately the quality of life for people with type 1 diabetes.“
„This is a most significant aid for type 1 diabetes advocacy and will assist any interested Parliamentarian now and into the future given the plan to keep it up to date with the latest data.“
„The T1D Index is an incredibly rich and compelling dataset on T1D globally. We are excited to collaborate with the team to further advance understanding of the burden of the disease and what can be done to improve care.“
“We are extremely grateful to JDRF for taking the leadership role in establishing the T1D Index which is going to provide tremendous visibility on the global picture as it relates to Type 1 Diabetes. As a result, we are convinced this will lead to a higher level of diagnosis, and enhanced ongoing treatment of the condition, ultimately leading to improved health outcomes and saving hundreds and thousands of lives.”
„I am a person living with T1D for the past 20 years & I volunteer at the Blue Circle Diabetes Foundation. I believe that people living with Diabetes should be empowered with proper education & engagement with local communities to create safe spaces so that they are able to voice their opinions & views.“
„TDYA is involved in educating the general public on Type 1 Diabetes in order that every young person with T1D should be able to live a healthy lifestyle, free of stigma, with controlled blood sugar levels, and achieve their goals in life.
We are developing education and training programs for primary and secondary schools, making use of the Mass media, organizing fund-raising activities, conducting regular youth leadership training camps, and peer-to-peer counseling centers, developing microfinance support for further education, and cooperating with the Ministry of Health.“
„Insulin for Life-USA has, for the last decade, dedicated itself to see that supplies essential for diabetes management are available to those in need within the developing world. Now, serving some 22 countries, this organization, „green in its operations“, is dedicated to saving lives and improving diabetes care for those that would otherwise go without“
“The T1D Index permits to finally understand and act on the challenges faced by people with type 1, their families, and communities globally and by country. I expect to see advocate and decision makers using it broadly to immediately start to improve the critical T1D situation.”
„The T1D Index is innovative in showing the real impact of T1Diabetes in people’s lives, and also will play a major role in providing extremely useful data, allowing countries to establish new policies to fight the burden and outcomes of the disease. I was very fortunate to be involved with the development of Brazilian data (via the Brazilian Diabetes Society) together with dear colleagues, and also working as an ISPAD Executive Board member, one of the partners of this initiative.“
„The T1D Index is a ground breaking project which for the first time has established the full extent of T1 diabetes. It provides important country level information which can be used to reduce the T1 burden for individuals, their family and the health system.“
Jeremiah B Cooper Liberia
Dr Carine de Beaufort Guest professor, Pediatric Diabetologist –Endocrinologist ISPAD President 2020-2022, Luxembourg Co-author
„ISPAD is a global scientific society with a focus on all forms of diabetes in children, adolescents and young adults. Its vision is to create a better world for this population. Active involvement of ISPAD membership has supported the development of the Global T1 Index. Now we need to move forward together to change and improve outcome, at diagnosis, treatment and prevention of acute and late complications.“
Professor Kim Donaghue The Children’s Hospital at Westmead and University of Sydney Australia Co-author
“As then ISPAD President I became involved in this important work, in particular the development and facilitation of the Survey in 2020 with JDRF on the Global State of Diabetes. This information is a powerful tool to drive change and awareness of the burden of diabetes”.
Dr Ileana E Gill Co-founder Guerreros Azules Venezuela
„The T1D Index represents a once in a lifetime opportunity to put the most accurate real-time data in the hands of advocates and key stakeholders from across the globe. Harnessing the power of data and making it accessible to all, allows the T1D community to have an even louder voice and will help further their efforts to influence change. As a member of JDRF’s Global Access team, I am so unbelievably proud to be involved in this work and looking forward to what comes next.“
„Being a past president of ISPAD and current steering member of LFAC, I think it is vital to have accurate numbers of the incidence and prevalence of type 1 diabetes in youth. We need to know how common deaths are in order to find these individuals in time to give them proper care.“
„Living with type 1 diabetes for 25 years and working in the industry for seven, illustrative data drives every meaningful piece of my work. From collaborations on life-sustaining medications and tools to advocating for more equitable access to care, everything we are working toward is made stronger with accurate numbers that show the true impact of this disease across the world.“
„This is an admirable piece of work from JDRF attempting to tackle a huge problem worldwide- and shining a light not only on the scale of the problem- but also with suggestions tailored to different countries. Its great to be involved with this- and hopefully this will help stimulate global improvement in T1D care“
“Evidence-based advocacy for T1D is for everyone, but the ins and outs of this type of advocacy are sometimes over complicated and inaccessible for the people who could use it most. The beauty of the T1D Index to me, is not just that it is the most compelling tool to date making the case for increased investment in global T1D care, but in its person-centered approach in which evidence-based advocacy is democratized for anyone to use.”
George Kwayu Chairman, Tanzania Diabetes Youth Alliance Tanzania
„TDYA is involved in educating the general public on Type 1 Diabetes in order that every young person with T1D should be able to live a healthy lifestyle, free of stigma, with controlled blood sugar levels, and achieve their goals in life.
We are developing education and training programs for primary and secondary schools, making use of the Mass media, organizing fund-raising activities, conducting regular youth leadership training camps, and peer-to-peer counseling centers, developing microfinance support for further education, and cooperating with the Ministry of Health.“
Sarah E. Linklater (née Allan) PhD Canada Co-author
“The Index provides much-needed definition to what has long been a blurry and incomplete picture on the global burden of T1D – and the results are striking. It’s been a privilege to contribute to this initiative, which will be a catalyst for countless initiatives aimed at improving and saving lives impacted by T1D.”
„We are delighted to be able to contribute to the T1D index. I led the work on the recent systematic review on incidence of type 1 diabetes in adults for the IDF Diabetes Atlas. This highlighted the paucity of data on type 1 diabetes in adults, as well as the surprisingly high rates in late adulthood. The T1D index builds on the data collected from our systematic review, and provides a comprehensive estimate of the global burden of type 1 diabetes in different parts of the world. The T1D index highlights the urgent need to better identify adults presenting with diabetes who in fact have underlying T1D. It will no doubt be an invaluable resource for healthcare professionals as well as health organizations for advocacy and healthcare planning.“
„I was very excited to be involved in the generation of the T1D Index. Understanding the burden of type 1 diabetes for the world to date has been challenging. Such information is crucial, not only to increase the awareness of type 1 diabetes, but also to inform public health policy, improve delivery of care and ultimately the quality of life for people with type 1 diabetes.“
„As president-elect of the Brazilian Society of Diabetes (SBD) for the term 2020/2021, I was contacted by JDRF’s senior staff Dr. Sanjoy Dutta in 2019 regarding the initiation of cooperative works between JDRF and SBD. A meeting followed in 2020 with Mr. Mike Wilson, and arrangements were then made for development of the comprehensive Brazilian T1D epidemiological data by SBD. In 2021 I was honoured to coordinate an online workshop involving SBD’s Epidemiology Department and JDRF’s T1D Index research staff, during which the updated Brazilian data were presented. A rich and hopefully lasting interchange followed between SBD and JDRF.“
„Data helps paint pictures – vivid pictures that are easy to understand and connect with. The T1D Index is bringing to life – finally! – the challenges that people with Type 1 diabetes face all over the world. As a South African with Type 1, I’m excited to see how this can advance our advocacy efforts so that we can improve the lives of people with Type 1 in SA.“
Karla F S Melo, PhD in Endocrinology and Metabolism, Coordinator of the Public Health Department from the Brazilian Diabetes Society, Brazil
„It was an honor and a pleasure to contribute to the T1D Index, sharing information about Brazilian public health policies on diabetes, their results and ongoing initiatives. The data to be published in the T1D Index are very important for further elaboration of strategies to improve the health and quality of life of people with diabetes.“
“I wish to congratulate the authors of the T1D Index. This is the first such compilation internationally and shows the huge burden of type 1 diabetes in different parts of the world. I am particularly concerned that India has one of the largest numbers of T1D, both below, as well as, above 20 years of age. It is also worrying that the remaining life expectancy in those with T1D in India is only 24 years, compared to 69 years in Japan and 67 years in Australia. This points to the need for improving the control of T1D in developing countries like India”.
Dr Graham Ogle General Manager, Life for a Child Program Diabetes NSW, Australia Co-author
„I am delighted to have participated in the development of the T1D index. It is a truly novel initiative which will greatly assist advocacy, awareness, and resource allocation, and thereby potentially saving thousands of lives and extending the lives of tens of thousands more.“
„T1D Index is truly a groundbreaking initiative that will change the face of T1D globally. I am very pleased and honoured to be part of this important work. Let’s take on T1D together!“
Professor Trevor J Orchard MD, M Med Sci, FAHA, FACE United States of America Co-author
„I was involved mainly in terms of the epidemiology input, particularly as regards consideration of mortality rates utilizing both our Pittsburgh data and that acquired in Rwanda. The index will allow, in addition to supplying essential health care planning needs, the recognition of the increasing burden of T1D in income challenged countries“
Christopher C Patterson Honorary Professor of Medical Statistics and Epidemiology, Queen’s University Belfast, United Kingdom
„The T1D Index incorporates welcome methodological developments which refine previous attempts to estimate worldwide numbers with type 1 diabetes. These include estimates made by colleagues and myself for childhood and adolescence in the International Diabetes Federation Atlas and estimates for all age-groups made by a WHO working group. „
„The T1D Index is an ambitious global coalition that brings together researchers, advocates and people living with T1D from around the world. While the data is ground-breaking and reveals for the first time the significant global impact of T1D, it is the unprecedented collaboration that drives this work which is the most promising development for people everywhere who live with the condition. We hope this effort continues to shine a light on T1D and empower people and decision makers to act now and turn the tide of T1D.“
Professor Marian Rewers MD PhD United States of America
„I had the pleasure to review the United States T1D data for the Global T1D Index. The authors created a fantastic comprehensive global picture of T1D by showing the size and growth of T1D in countries around the world and how these numbers are changing over time.“
Tom Robinson VP Global Access, JDRF Australia Co-author
“We hope that these country-level modelling results will be used by policy makers, researchers, and healthcare professionals alike to build initiatives that improve surveillance of T1D worldwide and encourage Universal health coverage programs, so that T1D care is available and affordable to all, addressing the substantial global burden of this disease.”
“ I am thankful to JDRF for choosing me as a spokesperson from India. T1D index is a huge work that showcases the importance of prompt diagnosis, access to insulin and test strips, self-management tools and access to technology. With this research work, further exploration can be done, which can help us restore the quality of life of everyone living with type 1 diabetes. This can change the numbers and stories.“
„The T1D Index is a truly remarkable resource, providing a clear picture of the impact of type 1 diabetes around the world, while also being a brilliant resource for diabetes grassroots and community advocacy. I’m honoured to have contributed to discussions about communication and language. Congratulations to JDRF for leading this important work.“
„As people living with diabetes, our voices are still very underrepresented in research. The T1D Index allows for us to be part of something bigger and we are also given the opportunity to be heard as the people living with the diabetes. Nothing about us without us!“
„Taking the first step, creating something from scratch, going from zero to one – is always the most challenging. What it yields is a foundation that others can build on and drive exponential growth. This is what we strongly believe at Diabesties, and I’m excited to see the same principle in action with the T1D Index. It is a much needed development that would allow governments, support organizations and broader stakeholders, to accurately understand the urgency that Type 1 Diabetes requires globally. As organisations and people living with the condition, we have continuously tried to raise the profile of T1D, but were missing this crucial piece of evidence. The T1D index captures poignant and powerful data which outlines key issues and metrics. I am confident that we would be able to use this data in multiple ways to improve the quality AND quantity of life for those living with T1D. The index not only helps understand the reality of disparity in access, but also serves as a tool to influence policy that can help make a meaningful and sustainable change. This comprehensive document is a major resource for the entire community and we at Diabesties, are grateful to be partners in this grand pursuit.“
“The focus on early intervention and prevention is critical and the best way to understand the impact of a disease and its progression is to collect meaningful data. We are now in the position where we have a powerful tool to assist governments and the global community to act. These investments will have profound social, heath, and economic benefits for all of society.”
“We are extremely grateful to JDRF for taking the leadership role in establishing the T1D Index which is going to provide tremendous visibility on the global picture as it relates to Type 1 Diabetes. As a result, we are convinced this will lead to a higher level of diagnosis, and enhanced ongoing treatment of the condition, ultimately leading to improved health outcomes and saving hundreds and thousands of lives.”
„The Index is accurate because it uses the right tool for the right task, a good combination of traditional statistic method and machine learning techniques. With more and better data expected to be available, and together with ongoing model tuning, the Index is just going to be better and better in simulating an even more granular and accurate picture of the T1D community. And I am extremely proud to be involved in the whole process.“
International Diabetes Federation Diabetes Atlas Type 1 Diabetes in Adults Special Interest Group
„We are delighted to be able to contribute to the T1D index. We conducted the recent systematic review on incidence of type 1 diabetes in adults for the IDF Diabetes Atlas. This highlighted the paucity of data on type 1 diabetes in adults, as well as the surprisingly high rates in late adulthood. The T1D index builds on the data collected from our systematic review, and provides a comprehensive estimate of the global burden of type 1 diabetes in different parts of the world. The T1D index highlights the urgent need to better identify adults presenting with diabetes who in fact have underlying T1D. It will no doubt be an invaluable resource for healthcare professionals as well as health organizations for advocacy and healthcare planning.“
T1D-Index-Champions
Henk-Jan Aanstoot, MD, PhD Pediatrician-diabetologist and clinical research Director Diabeter Netherlands
„T1D-Index is extremely important as it illustrates not only the size and impact of type 1 diabetes, but creates a solid scientific basis for a world-wide call for action. I am glad we could contributed and we will help to use the T1D-Index to improve outcomes and the lives of all people affected by T1D. „
„In this centenary year of the first human life to be saved with the discovery of insulin, it is right that we put a spotlight on the global inequality of access in type 1 diabetes medicines and treatments. The T1D Index has been developed by JDRF and partners to give all countries for the very first time trustworthy data on type 1 prevalence, predicted growth and the devastating health impact. It’s a vital new tool in our work to eradicate type 1 diabetes and we will be working with international leaders to help design more equitable global access to treatments.“
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)
„The availability of the Type 1 Diabetes (T1D) Index is a wake-up call for the Low and Middle Income Countries (LMIC) that now there is a rich resource of data and tools to handle the epidemiology and quality management of T1D in these countries.“
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
“As President of the International Diabetes Federation, I am delighted that we are partnering with JDRF and other organisations in the launch of our shared type 1 diabetes Index. Just a couple of years ago a review in a diabetes journal reported a high burden of illness for people living with type 1 diabetes concluding that significant investment in research and development of novel treatments for this condition are urgently needed. The T1D Index will help to clarify the type 1 diabetes burden and the collection of accurate data will help planning for those with type 1 diabetes in many countries”
„T1D Index is the result of huge effort to visualise the status of T1 diabetes worldwide. Data have never gone that far. I feel honored to have contributed to this amazing initiative and supported JDRF to get access to the T1 diabetes community in Spain“
Dr Juliana Chizo Agwu Consultant Pediatrician in Diabetes and Endocrinology, Sandwell and West Birmingham NHS Trust, United Kingdom
„Although more children with diabetes are being diagnosed in sub-Saharan Africa, their outcome is poor and complications are high. The TID Index will help policy makers, NGO’s and others direct aid where it will be most impactful.“
Nanette DeTurk JDRFI Director Emirita United States of America
„I’m excited about this credible data for the first time to zero in on T1D impact across the global. I’m beyond thrilled about the future in extending the lives and health of all those living with this disease.“
Mark Fischer-Colbrie Former Chair, JDRF International and volunteer Unites States of America
„This brilliant work will have an incalculable and global impact on the lives of those of type one diabetes and their families. As a 20 year volunteer and former Chairman of JDRF, it is great to see this foundational work that will drive advances in public policy around the world.“
Claudia Graham, PhD, MPH Chair of the Advocacy & Impact Committee Member of the International Board of Directors, JDRF, United States of America
„My involvement stems from the simple issue that unless Type 1 people have access to appropriate treatments, we are not helping to make life better for people with T1D. This index is the first solid step to highlighting where the inequities lie, and knowing where efforts can be focused.“
“Improved diabetes data will drive better outcomes for patients in all aspects of care. The T1D Index is an invaluable resource and will hopefully spark further T1D studies, especially within under-resourced countries.”
“As a member of the T1D community, I know many are not as fortunate as I am to have the resources necessary to live a healthy and fulfilled life. This is why I am so proud that significant progress has been made to understand T1D’s global impact through the T1D Index. We are calling on government and public health decision makers throughout the world to utilize the tool to identify and implement interventions that can change the trajectory of T1D.”
Jamie Kurtzig, JDRF Global Access Volunteer & Stanford Student Researcher
„After living in Ukraine in 2019 and noticing a lack of resources for Ukrainians with diabetes, Sina and I led a collaboration between T1D Index and the Ukrainian Student Association at Stanford to translate the T1D Index into Ukrainian. Not only is the T1D Index an accessible tool detailing how diabetes impacts people around the world, but it also provides critical information on how we can reduce these disparities to work towards a more equitable future.“
Nupur Lalvani Founder Director Blue Circle Diabetes Foundation, India
“This is such a breakthrough in how we address T1D Globally (and Locally)! The T1D Index will increase awareness of the disease and its impact; will create action in more countries; and will improve lives for those living with T1D and their families.”
“In a global world, countries are both similar and different. The Global T1 Index us essential tool to provide data , information and identify the needs of people with diabetes, a first step in improving care”
Dr Chantal Mathieu, PhD, Endocrinology Leuven Belgium
„Finally we will have a tool that maps T1D! Working on the disease for many years, having data on prevalence and other relevant issues is essential. In INNODIA, a project researching biomarkers of T1D and running clinical trials to arrest beta-cell destruction, we welcome this new initiative!“
Sina Mollaei Undergraduate student at Stanford University United States of America
“Providing this data to a global audience is an exciting step towards a world without diabetes. I look forward to seeing how the index gets utilized in the coming years”
Vivian Nabeta Founder & Executive Director Sonia Nabeta Foundation United States of America
„It was great to see the demo and to have the opportunity to share my thoughts on the T1DIndex. I applaud the initiative and efforts as data is central to developing meaningful, contextualized and impactful interventions. SNF is looking forward to working with JDRF to strengthen the health equity aspects of the index.“
„I am a person living with T1D for the past 20 years & I volunteer at the Blue Circle Diabetes Foundation. I believe that people living with Diabetes should be empowered with proper education & engagement with local communities to create safe spaces so that they are able to voice their opinions & views.“
Ann Sofie Westh Olsen, PhD Global Access to Care Lead Novo Nordisk Denmark
“We hope that the Type 1 Index will help contribute to the wellbeing of children and youth across the world, by shining more light on the substantial global burden of this disease and improving healthcare policies, especially in Low and Middle Income countries.”
Dorota Pawlak, PhD Chief Scientific Officer JDRF Australia and Director Australian T1D Clinical Research Network, Australia
„Through the work of T1D Index we can now grasp the extraordinary burden of type 1 diabetes in every country across the globe. Action is now required across all sectors of medical and public health systems to lead the change.“
Margery Perry Past Chair of Research, JDRF United States of America
„It is imperative that we all take note of this important work. We can’t alter what we can’t measure and lives depend on it. This Global effort will transform the way the world thinks about T1D. This is only the beginning of the changes that need to happen in order to save lives.“
„Having the first comprehensive global view of the scope and scale of type 1 diabetes means we can help more people, and bring more attention to this relentless condition.“
Derek Rapp Former CEO, JDRF International and volunteer United States of America
“Type 1 diabetes can be a devastating diagnosis at a personal level, and yet at a societal level, T1D has not been well understood. The T1D Index sheds light on the magnitude of T1D’s impact globally which should lead to greater urgency to find improved therapies and even cures.”
Lorne Shiff JDRFI Director Emirita United States of America
„Having been involved with JDRF for over 50 years, this effort is monumental. The index will saves lives around the world and that is what it is all about.“
„EUDF is proud to support the launch of the T1D Index. The T1D Index measures the human and public health impact of the T1D crisis in every country across the globe. EUDF will use these data and insights from the T1D index in our advocacy work with European policy makers. Greater awareness of the impact of T1D will help change the lives of people with T1D.“
Francesca Ulivi CEO, Fondazione Italiana Diabete Italy
„The T1D Index is the strongest and fundamental tool that will allow everyone advocating for the disease to be heard from institutions and general population, which is not affected. Type 1 diabetes has been confused and misunderstood for a long time, the consequences of the disease have been mostly underestimated, now, with the evidences so clearly presented in the T1D Index, it will be clear for everyone how T1D affects the life of everyone of us and our world.“
Beatrice Vetter, PhD Deputy Director NCDs, FIND Switzerland
“Data from the T1D index will demonstrate to country decision makers how better access to diagnostics and self-monitoring tools can save health systems money and improve quality of life for people living with diabetes.”
David Walton, Chief Executive Officer T1D Exchange, United States of America
„The T1D index is an incredibly rich and compelling dataset on T1D globally. We are excited to collaborate with the team to further advance understanding of the burden of the disease and what can be done to improve care.“
„The T1D Index will highlight to the world for the first time the true scale and burden of this disease globally. Such information will generate attention and demand investment, both of which are needed on our pathway towards eventually delivering a world without T1D“
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