Core Registry Elements

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Please review these sections of proposed core registry elements.  Note that each section provides an opportunity for you to rate its completeness, accuracy and likelihood of being completed by a clinician or existing in the EMR.  There is also a comment field for anything that you think is wrong, missing or otherwise problematic.    Please be thorough in your references to issues or recommended changes.

Also note that this form has a lot of branching logic.  I recommend that you click on every checkbox when it indicates that there is branching to make sure you see all of the data that we are considering for data collection.

Core Registry Elements

CP Specific Required Elements

Gross Motor Function Classification System level
Primary Movement Disorder/Tone
Other Movement Disorder/Tone
CP Distribution/Topology [branching]
Bilateral details
Unilateral details

CP Specific Required Elements ratings and comments

Likelihood that YOU or your CP engaged practitioners would capture these data in your EMR?
Should these elements be required?

Birth History

Delivery route

Birth History ratings and comments

Likelihood of data being available in your EMR
Should these birth history elements be required?

Prenatal Risk Factors

Multiple Pregnancy [branching]
Multiple Pregnancy Number
In utero movement
Infections during pregnancy
Problems during pregnancy (check all that apply)
Maternal Substance use or exposure during pregnancy
Maternal Anesthesia or sedation
Other prenatal risk factors

Prenatal risk factors comments and ratings

Likelihood of these prenatal risk factors being available in your EMR?
Should these prenatal risk factor elements be required?

MRICS

MRICS Options (select all that apply) [branching]
Maldevelopments [branching]
Disorders of cortical formation
Other maldevelopments
Periventricular Leukomalacia (PVL)
Combination PVL and IVH sequelae
Sequelae of IVH or periventricular hemorrhagic infarction
Predominant Grey Matter Injury Choices [branching]
Basal Ganglia/thalmus lesions
Cortico‐subcortical lesions only (watershed lesions in parasagittal distribution/multicystic encephalomalacia) not covered under arterial infarctions
Arterial Infarction [branching]
Miscellaneous

MRICS comments and ratings

Likelihood of these MRICS elements being available in your EMR?
Should these MRICS elements be required?

Presumed Etiology

Presumed Etiology choices [branching]
Cerebral Malformation
genetic/metabolic condition

Presumed etiology comments and ratings

Likelihood that YOU or your CP engaged practitioners would capture these data in your EMR?
Should these presumed etiology elements be required?