1st Cohort Publication - The DICODI population study
Sweden 
Uppsala University, Denmark 
Aalborg University Hospital, Norway 
Oslo University, United Kingdom 
Milltons.
Surveys conducted in Sweden and in Denmark showed a clear frustration by people living with diabetes requiring better GI diagnostics and better management.
Discussions between the gastroenterologists and researchers from Uppsala University, Aalborg University and Oslo University shared common frustrations regarding overlapping symptoms of chronic GI complications in diabetes.
We suggested to assess the retina as a potential biomarker for enteric and other neurodegenerations.
--->Main outcome: Proposed digital patient-reported outcome (PRO) tools to disentangle GI symptoms and track neurodegeneration
2nd Cohort Publication - The Retinal Nerve Associations
The Retinal Nerve Fiber Layer Thickness (RNFL) Is Associated with Systemic Neurodegeneration in Long-Term Type 1 Diabetes
Aalborg University Hospital (in vivo) Uppsala University Milltons
In follow up on the first publication, the Mech-Sence team (link) worked with the ophthalmology department, led by Prof. Henrik Vorum (link) and Dr. Thomas Nielsen (link).
We studied links between retinal nerve loss and systemic neurodegeneration.
The retina mirrored systemic neurodegeneration in three domains: peripheral (nerve conduction), autonomic (heart rate variability), and central (cognitive distortion). Different quadrants of the retina seemed to “map” to different dysfunctions.
Correlations between Retinal Nerve Fiber Layer (RNFL) thickness and organ systems in type 1 diabetes:
- Peripheral nerves
- RNFL thinning (superior, inferior, nasal quadrants)
- Associated with reduced nerve conduction velocity (motor and sensory nerves)
- Autonomic (heart)
- RNFL thickening (temporal quadrant, central fovea)
- Associated with reduced heart rate variability (parasympathetic withdrawal, sympathetic dominance)
- Central (cognition)
- RNFL thickening (nasal quadrant)
- Associated with higher levels of catastrophic thinking (rumination, magnification, helplessness)
DICODI - Digestive Complication in Diabetes- Ongoing Study
Using RedCap people living with diabetes filled a medical file then started answering PRO questionnaires related to vision (VFQ25), upper digestive complications (GCSI), general digestive complications (GSRS), peripheral neuropathy (MNSI) and autonomic neuropathy (COMPASS).
They answered the questionnaires at the start (T0) then after three months (T3) then every six months (T9 and T15). It remains ongoing.
Retinal (Vision Function) correlations are coherent with our previous study and the available publications.
A strong correlation is observed between vision decline and enteric neurodegeneration symptoms and general digestive symptoms.
The highest correlation was with autonomic and peripheral neuropathies.
We hope to fine tune these findings into more robust research to assess its future clinical applications in future versions of the DICODI study.
Similarly, as per the original birth idea of DICODI, there seems to be a stark divergence between what digestive complications the patient believes they are living with (when filling the first medical file-before answering any questionnaires) compared to the approximate results from the symptoms questionnaires.
This work focused on Gastroparesis and Coeliac Disease.
Though these findings are subjective, they further reinforce the idea of overlapping symptoms are causing diagnosis problems with daily impact on patient’s QOL.
Future versions of the DICODI study should add objective in vivo testing.
Study Design
Cohort: >850 patients with type 1 & 2 diabetes.
16 months follow-up, still ongoing.
Collaboration: Aalborg, Uppsala, Lund Universities and Milltons.
Retina ↔ Upper Digestive Symptoms
Upper GI (GCSI total): r = −0.313, p < 0.001
Retina ↔ General Digestive Symptoms
General GI (GSRS total): r = −0.389, p < 0.001
Stratification – Perception vs Questionnaires
This subjective reading provides potentially impactful clinical application that we suggest a need for a robust objective clinical testing.
---> Conclusion: symptom overlap is a serious barrier to accurate diagnosis, ensuring heavy impact on patient QOL.
Retina ↔ Neuropathy
> Peripheral neuropathy (MNSI): r = −0.421, p < 0.001
> Autonomic neuropathy (COMPASS): r ≈ −0.39, p < 0.001
Next Steps
DICODI launched in Sweden in May 2025 and is actively expanding to new countries with the aim to:
- Develop and validate a methodology of early detection of enteric neurodegeneration through the retina.
- Refine the stratification of GI complications in diabetes with objective testing.
Expand DICODI to your Country / University? Contact us (link)