Cure Sickle Cell Initiative | Page 2

CDE Detailed Report

Disease: Sickle Cell Disease
Sub-Domain: Additional Proposed Instruments
CRF: PhenX Toolkit: Quality of Care - Children

79 results.

CDE ID	CDE Name	Variable Name	Definition	Short Description	Additional Notes (Question Text)	Permissible Values	Description	Data Type	Disease Specific Instructions	Disease Specific Reference	Population	Classification (e.g., Core)	Version Number	Version Date	CRF Name (CRF Module / Guideline)	Sub Domain Name	Domain Name	Size	Input Restrictions	Source	Form Set	Form	Field
C59264	Child health plan name verify indicate code	ChildHlthPlanNameVerfyIndCode	Code indicating that the study has the correct name of the child's health plan on file	Code indicating that the study has the correct name of the child's health plan on file	Our records show that your child is now in [INSERT HEALTH PLAN NAME]. Is that right?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:45:40.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	1
C59306	Child able talk about health care indicate code	ChdAblTlkAbtHlthCarIndCode	Code indicating whether the child is able to talk to doctors about his or her health care	Code indicating whether the child is able to talk to doctors about his or her health care	is your child able to talk with doctors about his or her health care?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 09:24:49.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	14
C59349	Respondent relation patient code	RespondRelatePtCode	Code for the relationship to the patient of the individual answering the questionnaire.	Code for the relationship to the patient of the individual answering the questionnaire.	How are you related to the child?	1;2;3;4;5;6	Mother or father;Grandparent;Aunt or uncle;Older sibling;Other relative;Legal guardian	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Adult;Pediatric	Proposed	1.00	2019-04-01 13:45:19.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	39
C59275	Child health care rating last 6 month scale	ChldHCRtngLst6MoScl	Scale for rating the child's health care over the last 6 months.	Scale for rating the child's health care over the last 6 months.	Using any number from 0 to 10, where 0 is the worst health care possible and 10 is the best health care possible, what number would you use to rate all your child's health care in the last 6 months?	0;1;2;3;4;5;6;7;8;9;10	Worst health care possible;1;2;3;4;5;6;7;8;9;Best health care possible	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:33:42.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	8
C59317	Specialist seen most often rating scale	SpcstSeenMostOftnRatingScl	Scale for rating the specialist the subject/participant saw most often in the last 6 months.	Scale for rating the specialist the subject/participant saw most often in the last 6 months.	We want to know your rating of the specialist your child saw most often in the last 6 months. Using any number from 0 to 10, where 0 is the worst specialist possible and 10 is the best specialist possible, what number would you use to rate that specialist?	1;2;3;4;5;6;7;8;9;0;10	1;2;3;4;5;6;7;8;9;Worst specialist possible;Best specialist possible	Numeric Values	Do not include dental visits or care your child got when he or she stayed overnight in a hospital.	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:33:42.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	22
C59292	Easy obtain counseling child last 6 month frequency scale	EsyObtCounslChLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to obtain counseling or treatment for emotional, developmental, or behavioral problems for the child.	Scale of the frequency in the last 6 months that it was easy to obtain counseling or treatment for emotional, developmental, or behavioral problems for the child.	In the last 6 months, how often was it easy to get this treatment o r counseling for your child?	1;2;3	Never;Sometimes;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:16:41.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC15
C59328	Receive assistance obtain prescription medication indicate code	RcvAsstObtPrscrpMdIndCode	Code indicating whether assistance was received in obtaining prescription medications	Code indicating whether assistance was received in obtaining prescription medications	Did anyone from your child's health plan, doctor's office, or clinic help you get your child's prescription medicines?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:37:53.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC24
C59339	Special therapy due health condition indicate code	SpcTherDueHlthCondIndCode	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy due to a health condition	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy due to a health condition	Is this because of any medical, behavioral, or other health condition?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:38:12.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC35
C59265	Child health plan name	ChildHlthPlanName	Name of the child's health plan	Name of the child's health plan	What is the name of your child's health plan?			Alphanumeric	Collect if "Child health plan name verify indicate code" is answered 2 (No).	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:50:08.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X	100	Free-Form Entry	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	2
C59307	Child personal physician explain clearly to child last 6 month frequency scale	ChPslPhyExpClrToChLst6MoFrqScl	Scale for the frequency over the past 6 months that the child's personal physician explained things in a way that was easy for the child to understand	Scale for the frequency over the past 6 months that the child's personal physician explained things in a way that was easy for the child to understand	In the last 6 months, how often did your child's personal doctor explain things in a way that was easy for your child to understand?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:22:22.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	15
C59350	Respondent receive help complete questionnaire indicate code	RespRcvHlpCmpltQaireIndCode	Code indicating whether the respondent received assistance in completing the questionnaire.	Code indicating whether the respondent received assistance in completing the questionnaire.	Did someone help you complete this survey?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Adult;Pediatric	Proposed	1.00	2019-04-01 13:50:03.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	40
C59276	Child enroll school daycare indicate code	ChildEnrolSchlDycrIndCode	Code indicating whether the child is currently enrolled in school or daycare.	Code indicating whether the child is currently enrolled in school or daycare.	is your child now enrolled in any kind of school or daycare?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:40:46.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC5
C59318	Care via health plan last 6 month indicate code	CareViaHlthPlanLst6MoIndCode	Code indicating whether care was sought through the subject/participant's health plan in the last 6 months	Code indicating whether care was sought through the subject/participant's health plan in the last 6 months	In the last 6 months, did you try to get any kind of care, tests, or treatment for your child through his or her health plan?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:28:51.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	23
C59293	Receive help obtain counseling child last 6 month indicate code	RcvHpObtCounslChLst6MoIndCode	Code indicating whether help obtaining counseling or treatment for emotional, developmental, or behavioral problems for the child was received in the last 6 months	Code indicating whether help obtaining counseling or treatment for emotional, developmental, or behavioral problems for the child was received in the last 6 months	Did anyone from your child's health plan, doctor's office, or clinic help you get this treatment or counseling for your child?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 09:26:29.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC16
C59329	Prescription medication need use indicate code	PrscrpMdNeedUseIndCode	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins	Does your child currently need or use medicine prescribed by a doctor (other than vitamins)?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:46:19.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC25
C59340	Special therapy due health condition endure 12 month indicate code	SpThrDuHlthCndEnd12MoIndCode	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy due to a health condition that has endured or is expected to endure for at least 12 months	Code indicating whether the subject/participant needs or receives special therapy such as physical, occupational, or speech therapy due to a health condition that has endured or is expected to endure for at least 12 months	Is this a condition that has lasted or is expected to last for at least 12 months?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:38:12.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC36
C59266	Child need urgent care last 6 month indicate code	ChldNeedUrgtCareLst6MoIndCode	Code indicating whether the child needed urgent care in the last 6 months.	Code indicating whether the child needed urgent care in the last 6 months.	In the last 6 months, did your child have an illness, injury, or condition that needed care right away in a clinic, emergency room, or doctor's office?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:52:32.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	3
C59308	Child personal physician spend enough time with child last 6 month frequency scale	ChPslPhySpEnTmWChLst6MoFrqScl	Scale for the frequency over the past 6 months that the child's personal physician spent enough time with the child	Scale for the frequency over the past 6 months that the child's personal physician spent enough time with the child	In the last 6 months, how often did your child's personal doctor spend enough time with your child?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:22:22.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	16
C59277	Child health care provider contact school daycare last 6 month indicate code	ChdHCPvdCntSchDycLst6MoIndCode	Code indicating whether the child's health care providers contacted school or daycare about the child's health or care in the last 6 months.	Code indicating whether the child's health care providers contacted school or daycare about the child's health or care in the last 6 months.	In the last 6 months, did you need your child's doctors or other health providers to contact a school or daycare center about your child's health or health care?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:44:38.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC6
C59319	Easy obtain care child health plan last 6 month frequency scale	EsyObtCrChHlthPlnLst6MoFrqScl	Scale of the frequency in the last 6 months that it was easy to obtain care for the child through his or her health plan	Scale of the frequency in the last 6 months that it was easy to obtain care for the child through his or her health plan	In the last 6 months, how often was it easy to get the care, tests, or treatment you thought your child needed through his or her health plan?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:16:41.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	24
C59294	Child more one kind health care provider service last 6 month indicate code	ChlMr1KdHthCrPvSvLst6MoIndCode	Code indicating whether child received care from more than one health care provider or service in the last 6 months.	Code indicating whether child received care from more than one health care provider or service in the last 6 months.	In the last 6 months, did your child get care from more than one kind of health care provider or use more than one kind of health care service?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 09:53:45.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC17
C59330	Prescription medication health condition indicate code	PrscrpMdHlthCondIndCode	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition	Is this because of any medical, behavioral, or other health condition?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:46:19.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC26
C59341	Problem emotion behavior development indicate code	PrbEmBhvDevIndCode	Code indicating whether the subject/participant has emotional, developmental, or behavioral problems for which he or she needs or receives treatment	Code indicating whether the subject/participant has emotional, developmental, or behavioral problems for which he or she needs or receives treatment	Does your child have any kind of emotional, developmental, or behavioral problem for which he or she needs or gets treatment or counseling?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 12:45:35.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC37
C59267	Child receive timely urgent care last 6 month reliability scale	ChdRcvTmlyUrgtCrLst6MoRelScl	Scale of how reliably the child received timely urgent care in the last 6 months.	Scale of how reliably the child received timely urgent care in the last 6 months.	In the last 6 months, when your child needed care right away, how often did your child get care as soon as you thought he or she needed?	1;2;4;3	Never;Sometimes;Always;usually	Numeric Values	Collect if "Child need urgent care last 6 month indicate code" is answered 1 (Yes).	PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 11:52:32.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	4
C59309	Child personal physician talk about child feel grow behave last 6 month indicate code	ChPrPhTkAbChFlGrBhLs6MoIndCode	Code indicating whether the child's personal physician talked in the last 6 months about how the child is feeling, growing, or behaving	Code indicating whether the child's personal physician talked in the last 6 months about how the child is feeling, growing, or behaving	In the last 6 months, did your child's personal doctor talk with you about how your child is feeling, growing, or behaving?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 09:24:49.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	17
C59278	Child health care provider help contact school daycare last 6 month indicate code	ChdHCPvHpCntSchDycLst6MoInCode	Code indicating whether the child's health care providers helped contact school or daycare about the child's health or care in the last 6 months.	Code indicating whether the child's health care providers helped contact school or daycare about the child's health or care in the last 6 months.	In the last 6 months, did you get the help you needed from your child's doctors or other health providers in contacting your child's school or daycare?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-28 15:44:38.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC7
C59320	Use health plan customer service last 6 month indicate code	UseHlthPlnCustSvcLst6MoIndCode	Code indicating whether attempts were made to use customer service at the subject/participant's health plan in the last 6 months	Code indicating whether attempts were made to use customer service at the subject/participant's health plan in the last 6 months	In the last 6 months, did you try to get information or help from customer service at your child's health plan?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 10:38:36.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	25
C59331	Prescription medication health condition endure 12 month indicate code	PrscrpMdHlthCondEnd12MoIndCode	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition that has endured or is expected to endure for at least 12 months	Code indicating whether the subject/participant needs or uses prescription medications other than vitamins because of a health condition that has endured or is expected to endure for at least 12 months	Is this a condition that has lasted or is expected to last for at least 12 months?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-04-01 11:46:19.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC27
C59295	Receive help coordinate different health care provider service last 6 month indicate code	RcHpCordDfHlCrPvSvLs6MoIndCode	Code indicating whether child's health plan, doctor's office, or clinic helped coordinate your child's care among different providers or services in the last 6 months	Code indicating whether child's health plan, doctor's office, or clinic helped coordinate your child's care among different providers or services in the last 6 months	In the last 6 months, did anyone from your child's health plan, doctor's office, or clinic help coordinate your child's care among these different providers or services?	1;2;1;2	Yes;No;Yes;No	Numeric Values		PhenX Protocol: Quality of Care - Children (#820102)	Pediatric	Proposed	1.00	2019-03-29 10:03:32.0	PhenX Toolkit: Quality of Care - Children	Additional Proposed Instruments	Phen-X		Single Pre-Defined Value Selected	PhenX	Neurology, Quality of Life, and Health Services Specialty Collection	Quality of Care - Children	CC18

79 results.