Purpose: Develop an easy-to-use data product to facilitate comparative effectiveness research involving complex patients. Scope: Claims data can be difficult to use, requiring experience to most appropriately aggregate to the patient level and to create meaningful variables such as treatments, covariates, and endpoints. Easy to use data products will accelerate meaningful comparative effectiveness research (CER). Methods: This project used data from the Medicare Chronic Condition Data Warehouse for patients hospitalized with acute myocardial infarction (AMI) or stroke in 2007 with two-year follow-up and one-year pre-admission baseline. The project joined over 100 raw data files per condition to create research-ready person- and service-level analytic files, code templates, and macros while at the same time adding uniformity in measures of comorbid conditions and other covariates. The data product was tested in a project on statin effectiveness in older patients with multiple comorbidities. Results: A programmer/analyst with no administrative claims data experience was able to use the data product to create an analytic dataset with minimal support aside from the documentation provided. Analytic dataset creation used the conditions, procedures, and timeline macros provided. The data structure created for AMI adapted successfully for stroke. Complexity increased and statin treatment decreased with age. The two-year survival benefit of statins post-AMI increased with age. Conclusion: Claims data can be made more user-friendly for CER research on complex conditions. The data product should be expanded by refreshing the cohort and increasing follow-up. Action is warranted to increase the rate of statin use among the oldest patients. Data Access: These data are not available from ICPSR. The data cannot be made publicly available. Data are stored on University of Iowa College of Public Health secure servers, and may be used only for projects covered within the aims of the original research protocol and Centers for Medicare and Medicaid Services (CMS)-approved data use agreement. Data sharing is allowed only for research protocols approved under data re-use requests by the CMS privacy board. The CMS process for data re-use requests is described at Research Data Assistance Center (ResDac). Please note that as of May 2013, the DUA covering this work is set to expire February 1, 2014. Thereafter, per the terms of the DUA, datasets created for this project may not be available. User guides are available from ICPSR for detailed descriptions of the data products, including a user guide for Acute Myocardial Infarction (AMI) Analytic Files and a user guide for Stroke and Transient Ischemic Attack (TIA) Analytic Files. Data dictionaries are available upon request. Please contact Nick Rudzianski (nicholas-rudzianski@uiowa.edu or 319-335-9783) for more information.

Fragility Multi-Center Retrospective Study

iEEG and EEG data from 5 centers is organized in our study with a total of 100 subjects. We publish 4 centers' dataset here due to data sharing issues.

Acquisitions include ECoG and SEEG. Each run specifies a different snapshot of EEG data from that specific subject's session. For seizure sessions, this means that each run is a EEG snapshot around a different seizure event.

For additional clinical metadata about each subject, refer to the clinical Excel table in the publication.

Data Availability

NIH, JHH, UMMC, and UMF agreed to share. Cleveland Clinic did not, so requires an additional DUA.

All data, except for Cleveland Clinic was approved by their centers to be de-identified and shared. All data in this dataset have no PHI, or other identifiers associated with patient. In order to access Cleveland Clinic data, please forward all requests to Amber Sours, SOURSA@ccf.org:

Amber Sours, MPH Research Supervisor | Epilepsy Center Cleveland Clinic | 9500 Euclid Ave. S3-399 | Cleveland, OH 44195 (216) 444-8638

You will need to sign a data use agreement (DUA).

Sourcedata

For each subject, there was a raw EDF file, which was converted into the BrainVision format with mne_bids. Each subject with SEEG implantation, also has an Excel table, called electrode_layout.xlsx, which outlines where the clinicians marked each electrode anatomically. Note that there is no rigorous atlas applied, so the main points of interest are: WM, GM, VENTRICLE, CSF, and OUT, which represent white-matter, gray-matter, ventricle, cerebrospinal fluid and outside the brain. WM, Ventricle, CSF and OUT were removed channels from further analysis. These were labeled in the corresponding BIDS channels.tsv sidecar file as status=bad. The dataset uploaded to openneuro.org does not contain the sourcedata since there was an extra anonymization step that occurred when fully converting to BIDS.

Derivatives

Derivatives include: * fragility analysis * frequency analysis * graph metrics analysis * figures

These can be computed by following the following paper: Neural Fragility as an EEG Marker for the Seizure Onset Zone

Events and Descriptions

Within each EDF file, there contain event markers that are annotated by clinicians, which may inform you of specific clinical events that are occuring in time, or of when they saw seizures onset and offset (clinical and electrographic).

During a seizure event, specifically event markers may follow this time course:

* eeg onset, or clinical onset - the onset of a seizure that is either marked electrographically, or by clinical behavior. Note that the clinical onset may not always be present, since some seizures manifest without clinical behavioral changes.
* Marker/Mark On - these are usually annotations within some cases, where a health practitioner injects a chemical marker for use in ICTAL SPECT imaging after a seizure occurs. This is commonly done to see which portions of the brain are active metabolically.
* Marker/Mark Off - This is when the ICTAL SPECT stops imaging.
* eeg offset, or clinical offset - this is the offset of the seizure, as determined either electrographically, or by clinical symptoms.

Other events included may be beneficial for you to understand the time-course of each seizure. Note that ICTAL SPECT occurs in all Cleveland Clinic data. Note that seizure markers are not consistent in their description naming, so one might encode some specific regular-expression rules to consistently capture seizure onset/offset markers across all dataset. In the case of UMMC data, all onset and offset markers were provided by the clinicians on an Excel sheet instead of via the EDF file. So we went in and added the annotations manually to each EDF file.

Seizure Electrographic and Clinical Onset Annotations

For various datasets, there are seizures present within the dataset. Generally there is only one seizure per EDF file. When seizures are present, they are marked electrographically (and clinically if present) via standard approaches in the epilepsy clinical workflow.

Clinical onset are just manifestation of the seizures with clinical syndromes. Sometimes the maker may not be present.

Seizure Onset Zone Annotations

What is actually important in the evaluation of datasets is the clinical annotations of their localization hypotheses of the seizure onset zone.

These generally include:

* early onset: the earliest onset electrodes participating in the seizure that clinicians saw
* early/late spread (optional): the electrodes that showed epileptic spread activity after seizure onset. Not all seizures has spread contacts annotated.

Surgical Zone (Resection or Ablation) Annotations

For patients with the post-surgical MRI available, then the segmentation process outlined above tells us which electrodes were within the surgical removed brain region.

Otherwise, clinicians give us their best estimate, of which electrodes were resected/ablated based on their surgical notes.

For surgical patients whose postoperative medical records did not explicitly indicate specific resected or ablated contacts, manual visual inspection was performed to determine the approximate contacts that were located in later resected/ablated tissue. Postoperative T1 MRI scans were compared against post-SEEG implantation CT scans or CURRY coregistrations of preoperative MRI/post SEEG CT scans. Contacts of interest in and around the area of the reported resection were selected individually and the corresponding slice was navigated to on the CT scan or CURRY coregistration. After identifying landmarks of that slice (e.g. skull shape, skull features, shape of prominent brain structures like the ventricles, central sulcus, superior temporal gyrus, etc.), the location of a given contact in relation to these landmarks, and the location of the slice along the axial plane, the corresponding slice in the postoperative MRI scan was navigated to. The resected tissue within the slice was then visually inspected and compared against the distinct landmarks identified in the CT scans, if brain tissue was not present in the corresponding location of the contact, then the contact was marked as resected/ablated. This process was repeated for each contact of interest.

References

Adam Li, Chester Huynh, Zachary Fitzgerald, Iahn Cajigas, Damian Brusko, Jonathan Jagid, Angel Claudio, Andres Kanner, Jennifer Hopp, Stephanie Chen, Jennifer Haagensen, Emily Johnson, William Anderson, Nathan Crone, Sara Inati, Kareem Zaghloul, Juan Bulacio, Jorge Gonzalez-Martinez, Sridevi V. Sarma. Neural Fragility as an EEG Marker of the Seizure Onset Zone. bioRxiv 862797; doi: https://doi.org/10.1101/862797

Appelhoff, S., Sanderson, M., Brooks, T., Vliet, M., Quentin, R., Holdgraf, C., Chaumon, M., Mikulan, E., Tavabi, K., Höchenberger, R., Welke, D., Brunner, C., Rockhill, A., Larson, E., Gramfort, A. and Jas, M. (2019). MNE-BIDS: Organizing electrophysiological data into the BIDS format and facilitating their analysis. Journal of Open Source Software 4: (1896). https://doi.org/10.21105/joss.01896

Holdgraf, C., Appelhoff, S., Bickel, S., Bouchard, K., D'Ambrosio, S., David, O., … Hermes, D. (2019). iEEG-BIDS, extending the Brain Imaging Data Structure specification to human intracranial electrophysiology. Scientific Data, 6, 102. https://doi.org/10.1038/s41597-019-0105-7

Pernet, C. R., Appelhoff, S., Gorgolewski, K. J., Flandin, G., Phillips, C., Delorme, A., Oostenveld, R. (2019). EEG-BIDS, an extension to the brain imaging data structure for electroencephalography. Scientific Data, 6, 103. https://doi.org/10.1038/s41597-019-0104-8

Usage

This dataset page includes some of the tables from the Medicare Data in PHS's possession. Other Medicare tables are included on other dataset pages on the PHS Data Portal. Depending upon your research question and your DUA with CMS, you may only need tables from a subset of the Medicare dataset pages, or you may need tables from all of them.

The location of each of the Medicare tables (i.e. a chart of which tables are included in each Medicare dataset page) is shown here.

Before Manuscript Submission

All manuscripts (and other items you'd like to publish) must be submitted to

phsdatacore@stanford.edu for approval prior to journal submission.

We will check your cell sizes and citations.

For more information about how to cite PHS and PHS datasets, please visit:

https:/phsdocs.developerhub.io/need-help/citing-phs-data-core

Documentation

Metadata access is required to view this section.

CCNP takes its pilot stage (2013 – 2022) of the first ten-year. It aims at establishing protocols on the Chinese normative brain development trajectories across the human lifespan. It implements a structured multi-cohort longitudinal design (or accelerated longitudinal design), which is particularly viable for lifespan trajectory studies, and optimal for recoverable missing data. The CCNP pilot comprises three connected components: developing CCNP (devCCNP, baseline age = 6-18 years, 12 age cohorts, 3 waves, interval = 15 months), maturing CCNP (matCCNP, baseline age = 18-60 years, 14 age cohorts, 3 waves, interval = 39 months) and ageing CCNP (ageCCNP, baseline age = 60-84 years, 12 age cohorts, 3 waves, interval = 27 months). The developmental component of CCNP (devCCNP, 2013-2022), also known as "Growing Up in China", a ten-year's pilot stage of CCNP, has established follow-up cohorts in Chongqing (CKG, Southwest China) and Beijing (PEK, Northeast China). It is an ongoing project focused on longitudinal developmental research as creating and sharing a large-scale multimodal dataset for typically developing Chinese children and adolescents (ages 6.0-17.9 at enrollment) carried out in both school- and community-based samples. The devCCNP houses longitudinal data about demographics, biophysical measures, psychological and behavioral assessments, cognitive phenotyping, ocular-tracking, as well as multimodal magnetic resonance imaging (MRI) of brain's resting and naturalistic viewing function, diffusion structure and morphometry. With the collection of longitudinal structured images and psychobehavioral samples from school-age children and adolescents in multiple cohorts, devCCNP has constructed a full school-age brain template and its growth curve reference for Han Chinese which demonstrated the difference in brain development between Chinese and American school-aged children.*This dataset contains only T1-weighted MRI, Resting-state fMRI and Diffusion Tensor MRI data of devCCNP.To access the devCCNP Lite data, investigators must complete the application file Data Use Agreement on CCNP (DUA-CCNP) at http://deepneuro.bnu.edu.cn/?p=163 and have it reviewed and approved by the Chinese Color Nest Consortium (CCNC). All terms specified by the DUA-CCNP must be complied with. Meanwhile, the baseline CKG Sample on brain imaging are available to researchers via the International Data-sharing Neuroimaging Initiative (INDI) through the Consortium for Reliability and Reproducibility (CoRR). More information about CCNP can be found at: http://deepneuro.bnu.edu.cn/?p=163 or https://github.com/zuoxinian/CCNP. Requests for further information and collaboration are encouraged and considered by the CCNC, and please read the Data Use Agreement and contact us via deepneuro@bnu.edu.cn.