Childhood and Young Adult Type 1 Diabetes Studies

ORPS, NFS, GRID

The history of studies on childhood Type 1 diabetes and its vascular complications

 

Altogether around 12,500 young people with Type 1 diabetes gave their time and effort to these pivotal studies, coordinated by the Departments of Paediatrics in Oxford and Cambridge over the last 30 years, which have contributed so much to our understanding of Type 1 diabetes and its complications.

Summary of main findings of these studies:

• ORPS/NFS: The importance of looking at albumin levels in the urine, particularly during puberty, to determine future risk for kidney complications in young people with Type 1 diabetes. These studies clearly demonstrated that poor glycaemic control along with increased urinary albumin, high blood pressure and lipid levels contribute to risk of kidney and heart complications. They also showed that a family history of high blood pressure, high lipids and heart disease can influence risk for complications in young people with Type 1 diabetes.

• GRID: This genetic study, involving over 10,000 young people, was pivotal in determining genes increasing risk of Type 1 diabetes and are now making a major contribution to understanding the genetic contribution to diabetes vascular complications.

You have helped advance our understanding of Type 1 diabetes
Thank you for all your support

 

• To thank you for:

  • Your help, which has made an enormous contribution to Type 1 diabetes research.
  • Your wish for us to keep in touch, to update you on progress of our research and informing you about future projects.

 

• To let you know:

  • That your contribution is still relevant to our future understanding of diabetes and its complications.
  • The DNA and the other blood and urine samples you provided are still helping us understand how genes predispose to diabetes and its complications and explore the possibility of accurately identifying risk for complications at an early stage.
  • You are clearly a very unique group of young people and we believe through your contributions we can further explore how markers of risk during puberty could be applied to early intervention and preventative strategies.

 

• To provide you with information about our future plans:

We already know that people diagnosed with Type 1 diabetes at a young age have an increased risk of developing long-term vascular complications, including problems with the kidney, eyes and heart. However, the information on how common these complications are in adult life is limited. We want to take a closer look at this issue. Please read on to see how.

 

Future plans

• What are we trying to do?

Project title: ‘Long-term vascular complications in young people with childhood-onset type 1 diabetes’

The overall aim of this project is to obtain information on diabetes complications related to the eye, kidney and heart, through NHS data systems, in young adults with Type 1 diabetes (20-40 years), who were previously recruited to the ORPS/NFS/GRID studies, when they were younger than 16 years of age. This will help in gaining information on:

1. How frequent are diabetes complications during early adulthood.
2. Which are the main risk factors during childhood and adolescence (glucose levels, cholesterol levels, blood pressure, body weight) predisposing to the development of vascular complications during early adult life.

The study has been reviewed by the Cambridge South Research Ethics Committee and will be sponsored by the University of Cambridge with Prof David Dunger as the Chief investigator.

• What could we learn from this?

If we are to prevent complications in young people with Type 1 diabetes, we need to understand the factors leading to these outcomes. ORPS/NFS/GRID are the largest studies ever undertaken in this group of young people with Type 1 diabetes and could help in identifying risk factors for the development of complications. This is critical for the development of preventative and intervention strategies to improve the prognosis of all young people with Type 1 diabetes.

• How will we do this?

The information and samples you provided during your participation to ORPS/NFS/GRID, as teenagers, will be linked to NHS database systems, including the National Diabetes Audit, to track your clinical progress. We will need to provide your NHS number to NHS digital and Healthcare Quality Improvement Partnership (HQIP) – independent organisations with experience in NHS record linkage – to obtain and collate information from your personal records. These data will be anonymised and sent to the University Department of Paediatrics in Cambridge, for analysis.  During the whole process your personal information will remain entirely confidential.

However, we are aware that some people are concerned about their personal data being used in this way and if this is the case we encourage you to contact us. If you would like further information regarding your past participation in these studies, our future plans or do not wish us to track your clinical progress through the NHS systems for future studies, please contact us to discuss and/or opt out (contact details below).