Research Participant Data Integration

by | Dec 6, 2022 | BHC News, Long COVID, ME/CFS, Research News

Over the past 5 years, 285 of you have participated in an NIH-funded research study at Bateman Horne Center! This study was led by The Jackson Laboratory (JAX), one of the three ME/CFS Collaborative Research Centers funded by the NIH. BHC was the Clinical Core for JAX and our responsibility was to collect blood and stool samples from ME/CFS and long COVID patients and healthy controls together with comprehensive clinical and questionnaire data at multiple time points over the 5-year study.

Once the samples were collected, we’d send them to JAX for testing to see what types of changes occur in the immune system, metabolome, and gut microbiome. The hypothesis being tested examined the interplay between a patient’s immune system, metabolism and microbiome and how this affected disease onset and progression. Most participants provided 3-4 years of samples and clinical data. We collected at least 4 tubes of blood at each time point from each participant – some more than 4,500 tubes of blood over 5 years! Importantly, over the past 2 years, JAX and Columbia – one of the other NIH-funded CRCs – partnered with us to share blood samples collected from the same long COVID participants. Bringing all this molecular and clinical data together is now the culmination of this 5 year BHC and JAX partnership!    

Here’s how it is done. To bring together and analyze all of this data in a safe and secure manner, we generate Global Unique Identifiers (GUIDs). GUIDs allow us to link clinical and research data across multiple sites (BHC, JAX, Columbia) and share with multiple investigators. A GUID is a random code that is generated using a special software program that performs a one-way encryption to create a GUID. The GUID now becomes the unique identifier for all the information and results generated from any one individual participating in research and the GUID is the unique identifier for all research studies. GUIDs allow an individual’s data to be accumulated and shared across multiple projects over time, regardless of where and when that data is collected, without having to share any personal identifying information across sites and with researchers. Each time you participate in research, you create a pearl of knowledge. GUIDs allow us to string pearls together, safely and securely, into one long strand that may help reveal the disease mechanisms of ME/CFS and long COVID. 

We will create a database that associates a research participants’ GUID with clinical data and biospecimens obtained from that individual. Once complete, the database will be deposited to mapMECFS.org so researchers interested in analyzing all the various data types can have access. This rich resource will hopefully spark the interest of many curious and new researchers interested in solving ME/CFS and long COVID. Most of all, we hope it will accelerate research, discover, and solutions for ME/CFS and long COVID.  

 


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