Here’s one from the Greater Plains Collaborative Share Thoughts on Breast Cancer Study:
The Share Thoughts on Breast Cancer study began in May 2015 and is recruiting 1,300 women aged 18 and over who were first diagnosed at one of the participating medical centers with ductal carcinoma in situ or stage I-III breast cancer during January 1, 2013 to May 1, 2014.
The cohort definition was:
- Inclusion criteria for the UNDERLYING de-identified study population:
- Any sex
- Diagnosed with primary breast cancer
- Age 18+ at the time of dx
- diagnosed during 7/1/2012 - 6/30/2013 (i.e. 18-30 months prior to survey)
- (if there are insufficient patients diagnosed in this period, we may extend the window)
- Also, as the timeline for survey implementation slips we will shift the diagnosis window accordingly
- Exclude from the SURVEY sample if:
- Sex not equal to female
- Less than 18 years of age
- Prior cancer diagnosis
- Breast cancer was not microscopically confirmed
- Only tumor morphology was lobular carcinoma in situ
- Stage IV breast cancer
- Known to be deceased
- Non-English speaking (for now)
In this project, each of the 8 sites integrated their tumor registry NAACCR file into i2b2 (NAACCR_ETL in the GPC wiki); we collected about 50 variables ( bc-variable.csv) and used R markdown and python to do QA (bc_qa) and load the data into REDCap. See also BreastCancerDataSharing in the GPC wiki.
Using a similar approach, the GPC CancerRCR project defines 3 cohorts; for example:
Query 2: PCORnet Modular Program request (Newly Identified Cancer Patients with Evidence of Genetic Test)
- Age Restriction: > 21 years of age as of September 30, 2016
- Query Period: October 1, 2015 – September 30, 2016
- Health Event of Interest (Index) Groups: Lung, Colorectal, Breast, Prostate, Pancreatic or Esophageal Cancer DX
- Inclusion/Exclusion Criteria 1: Exclusion of the above cancers 10 years before the diagnosis of interest
- Inclusion/Exclusion Criteria 2: Include procedure for common molecular or genetic tests for cancers of interest
- Stratification: Age group, sex, race, ethnicity
The GPC’s NAACCR_ETL approach is outdated by v18 (GPC issue #739) and the PCORNet CRG on Cancer is considering a PCORNet CDM tumor table. In considering new approaches, I discovered this OHDSI Oncology WG.
The current thinking is that the PCORNet tumor table would look a lot like the NAACCR file, whereas I gather this OHDSI WG aims to do a pretty deep integration of NAACCR data into the OMOP CDM; something that wouldn’t easily be reversible, for example. But I see you’re also scraping vocabulary data out of NAACCR specs and I suspect there’s some effort in that area that we could share.
I see one or two active groups in HL7/FHIR as well. I aim to expand on that a bit in GPC issue #739.