Hi everyone,
I wanted to share the self-research project I’ll be
working on as part of the Keating Memorial group
and hopefully get feedback as I go.
Background
I am currently dealing with ongoing health issues
that have not yet been fully explained or
diagnosed. Over time, I’ve started collecting a large
amount of personal data, including medical
records, lab results, symptom patterns, and
genetic data. My goal is to better understand what
may be underlying these issues and to build a more
complete picture that could eventually support
clinical evaluation or programs like the
Undiagnosed Diseases Network.
Research Focus
My current focus is identifying patterns across:
. Longitudinal lab values (including values within
“normal” ranges that may still show trends)
· Symptom tracking over time
. Genetic variants (especially variants of uncertain
significance)
. Family-level data to explore shared traits and
variability
I am particularly interested in:
. Variable expressivity and incomplete penetrance
. Correlations between symptoms and lab
fluctuations
. How genetic findings may (or may not) align with
real-world presentation
What I Plan to Do
. Organize and centralize my existing data (labs,
symptoms, genetics)
. Track ongoing symptoms and relevant variables
more consistently
. Compare patterns across time and across related
individuals where possible
.Identify potential clusters or trends that could guide further investigation.
Where I’d Appreciate Feedback
. Best practices for structuring and organizing
multi-source health data
. Approaches to interpreting variants of uncertain
significance
. Methods for identifying meaningful patterns vs
noise
. Any tools or workflows that could improve
analysis or visualization
Goal
My overall goal is to move from scattered
information to a structured, interpretable dataset
that can help guide next steps-both for my own
understanding and for potential clinical or research
collaboration.
I’m looking forward to learning from others here
and sharing updates as I make progress.