Hi Song,
MCW is coding with G71.02 and we returned ~30 patients.
Kristen Osinski, MS
Business Analyst, Biomedical Informatics
Clinical & Translational Science Institute
Medical College of Wisconsin
kosin...@mcw.edu (414) 805-7245 (office)
On 5/18/20, 2:46 PM, "Gpc-dev on behalf of gpc-dev-requ...@listserv.kumc.edu"
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Today's Topics:
1. RE: Add a discussion item to GPC-dev today (05/05/2020)
(Xing Song)
----------------------------------------------------------------------
Message: 1
Date: Mon, 18 May 2020 15:45:30 -0400
From: Xing Song <xs...@kumc.edu>
To: "gpc-dev@listserv.kumc.edu" <gpc-dev@listserv.kumc.edu>
Cc: Jeffrey Statland <jstatl...@kumc.edu>
Subject: RE: Add a discussion item to GPC-dev today (05/05/2020)
Message-ID:
<dm6pr11mb47079a67896bc4922dbbaac8dd...@dm6pr11mb4707.namprd11.prod.outlook.com>
Content-Type: text/plain; charset="utf-8"
Dear GPC sites,
Here is a second follow-up on the diagnosis coding question for
Facioscapulohumeral muscular dystrophy (FSHD), as we discussed in the dev-call
two weeks ago.
May I know how FSHD is codified in your system (i.e. is it coded as the
granular IMO terms, or being properly mapped to the ICD10 G71.02 code, or being
mapped to the SNOMED CT concept
(https://urldefense.com/v3/__http://bioportal.bioontology.org/ontologies/SNOMEDCT?p=classes&conceptid=399091004))*__;Pw!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_BQXOnfs$
And how many FSHD patients can be identified by that corresponding codes?
The sites that I am still missing this information from are:
* MCW
* UIOWA
* Intermountain
* Allina
* MU
* UTSW
* Indiana
* Marshfield
Since we are trying to catch a LOI submission deadline and this information
is deemed to be important for the submission, we would really appreciate your
reply by the end of Wednesday (05/20/2020).
If you have already replied but I somehow missed it, please also remind me
again with your answers (and I apologize in advance for that!)
Thank you very much for sharing the information with us!
Xing Song, Ph.D.
Research Assistant Professor
Center for Medical Informatics and Enterprise Analytics
University of Kansas Medical Center
Email: xs...@kumc.edu<mailto:xs...@kumc.edu>
Phone: (913)-588-7605
From: Xing Song
Sent: Friday, May 8, 2020 10:31 AM
To: gpc-dev@listserv.kumc.edu
Cc: Jeffrey Statland <jstatl...@kumc.edu>; Russ Waitman <rwait...@kumc.edu>
Subject: RE: Add a discussion item to GPC-dev today (05/05/2020)
Dear GPC sites,
I would like to follow up on the diagnosis coding question for
Facioscapulohumeral muscular dystrophy (FSHD), as we discussed in the dev-call
this Tuesday.
May I know how FSHD is codified in your system (i.e. is it coded as the
granular IMO terms, or being properly mapped to the ICD10 G71.02 code, or being
mapped to the SNOMED CT concept
(https://urldefense.com/v3/__http://bioportal.bioontology.org/ontologies/SNOMEDCT?p=classes&conceptid=399091004))*__;Pw!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_BQXOnfs$
And how many FSHD patients can be identified by that corresponding codes?
Thank you very much for your reply in advance!
Xing Song, Ph.D.
Research Assistant Professor
Center for Medical Informatics and Enterprise Analytics
University of Kansas Medical Center
Email: xs...@kumc.edu<mailto:xs...@kumc.edu>
Phone: (913)-588-7605
From: Xing Song
Sent: Tuesday, May 5, 2020 10:08 AM
To: gpc-dev@listserv.kumc.edu<mailto:gpc-dev@listserv.kumc.edu>
Subject: Add a discussion item to GPC-dev today (05/05/2020)
Hi, GPC-dev,
We are hoping to understand how well Facioscapulohumeral muscular dystrophy
(FSHD) is coded across GPC sites. As we looked at KUMC?s data (in the forwarded
email), FSHD is coded by multiple IMO categories which have been grouped under
very general terms such as ICD9:359.1 and ICD10:71. However, there exists an
ICD10:71.02 code, which specifically capture the FSHD cohort, but not seem to
be utilized here at KUMC (and maybe similar issue applies to other GPC sites).
We want to see if any other GPC sites could have the capability to identify
the FSHD cohort either with this specific ICD10:71.02 code, or IMO categories
(as KUMC), or even SNOMED CT concept
(https://urldefense.com/v3/__http://bioportal.bioontology.org/ontologies/SNOMEDCT?p=classes&conceptid=399091004__;!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_nPsLs4s$
), with high sensitivity?
I actually have also logged a GPC Research Assessment Request for this,
which probably has already been broadcast to the sites.
Thank you very much!
Xing Song, Ph.D.
Research Assistant Professor
Center for Medical Informatics and Enterprise Analytics
University of Kansas Medical Center
Email: xs...@kumc.edu<mailto:xs...@kumc.edu>
Phone: (913)-588-7605
From: Russ Waitman <rwait...@kumc.edu<mailto:rwait...@kumc.edu>>
Sent: Monday, May 4, 2020 4:41 PM
To: Kiley Higgs <ksi...@kumc.edu<mailto:ksi...@kumc.edu>>; Xing Song
<xs...@kumc.edu<mailto:xs...@kumc.edu>>; Jeffrey Statland
<jstatl...@kumc.edu<mailto:jstatl...@kumc.edu>>; Michaela Walker
<mwalke...@kumc.edu<mailto:mwalke...@kumc.edu>>
Cc: Russ Waitman <rwait...@kumc.edu<mailto:rwait...@kumc.edu>>
Subject: Re: PCORI Grant- FSHD Review
Note the snomed concept exists:
https://urldefense.com/v3/__http://bioportal.bioontology.org/ontologies/SNOMEDCT?p=classes&conceptid=399091004__;!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_nPsLs4s$
https://urldefense.com/v3/__https://pcornet.org/pcornet-front-door/__;!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_1iQEQ-8$
[cid:image002.png@01D62D21.C864D3B0][cid:image004.png@01D62D21.C864D3B0]
Then just know the basic demographics,
Larger issue how the patients do over time ( prior discussion of wheelchair)
* BMI,
* medical comorbidities ? use elements of a Charlton comorbidity score,
* ambulatory or not (CPT code
* Which of these elements are in the CDM versus need to be collected
prospectively for the study in the registry
* The new standard minimal data set elements from the clinic tests (and
whether they cold be done via telemed) is the areas where data collection would
be needed. These clinic performance measures are often just in the clinic note
* e.g. Timed Up and Go
https://urldefense.com/v3/__https://www.ncbi.nlm.nih.gov/medgen/754182__;!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_250jHK0$
)
* Brooke Upper Extremity Score
*
https://urldefense.com/v3/__https://www.researchgate.net/figure/Grading-for-Brooke-and-Vignos-Scales_tbl2_224053494__;!!H8mHWRdzp34!u-auH474cQ1JqS1opvrHc5XaRfaOONSrYrKasIhkym2DGlXP-BOSy43_E5nwqg4$
Note the wheelchair CPT code seems to be used but underutilized. The
HCPCS are not used at UMC
[cid:image006.png@01D62D21.C864D3B0]
Russ
From: ksi...@kumc.edu<mailto:ksi...@kumc.edu>
When: 4:00 PM - 5:00 PM May 4, 2020
Subject: PCORI Grant- FSHD Review
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