PhenX Toolkit: Domains

Select	Protocol	ID
	Adaptive Behavior/Adaptive Function Vineland Adaptive Behavior Scales., 2nd ed. (VINELAND-II)	#820601
	Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), short form	#820201
	Aspartate Aminotransferase Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011	#811201
	Bilirubin Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011	#810901
	Body Temperature - Oral Thermometers Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010	#810102
	Body Temperature - Tympanic Thermometers Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010	#810101
	Chest X-ray ACR-SPR, Practice Parameter for the Performance of Chest Radiography, 2014	#810201
	Frequency of Sickle Cell Pain Episodes Per Year Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes	#830101
	Haptoglobin Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011	#810801
	Hemoglobin Characterization Association of Public Health Laboratories (APHL)	#830302
	History of Transfusion Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015	#830201
	Intelligence Scale - 16 to 90 years Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV)	#820501
	Intelligence Scale - 2 years, 6 months to 7 years, 7 months Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV)	#820502
	Intelligence Scale - 6 to 16 years 11 months Wechsler Intelligence Scale for Children, 5th ed., (WISC)	#820503
	Intelligence Scale - Birth to 3.5 years Bayley Scales of Infant and Toddler Development (BSID)	#820504
	Lactate Dehydrogenase Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011	#811001
	Lung Function - Diffusion Capacity MacIntyre, N., et al. Standardization of the single-breath determination of carbon monoxide uptake in the lung. EUR RESPIR J, 2005	#810301
	Lung Function - Lung Volume Wanger, J. et al. Standardization of the measurement of lung volumes. EUR RESPIR J, 2005	#810401
	Marital Status of Primary Caregiver Silent Cerebral Infarct Multi-Center Clinical Trial (SIT), Demographic/Phenotypic Information	#840101
	N-terminal Pro-brain Natriuretic Peptide (NT-proBNP) National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011	#810501
	NIH Stroke Scale (NIHSS) National Institutes of Health Stroke Scale (NIHSS)	#820801
	Pediatric NIH Stroke Scale (PedNIHSS) Pediatric National Institutes of Health Stroke Scale (PedNIHSS)	#820802
	Pediatric School Performance Pediatric Hydroxyurea, Phase III Clinical Trial (BABY HUG), Part VII: Education - School Questionnaire	#840201
	PedsQL Sickle Cell Disease Module The PedsQL Sickle Cell Disease Module	#820202
	Quality of Care - Adults The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Quality of Care Module	#820101
	Quality of Care - Children Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Plan Survey 4.0, Child Medicaid Questionnaire	#820102
	Recovery and Recurrence Questionnaire (RRQ) - Pediatrics The Recovery and Recurrence Questionnaire (RRQ)	#820702
	Reticulocyte Count National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011	#810601
	Self-efficacy in Sickle Cell Disease The Sickle Cell Disease Self-Efficacy Scale (SCSES)	#820401
	Serum or Plasma Ferritin National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009-2010	#811301
	Stroke Impact Scale (SIS) - Adults The Stroke Impact Scale (SIS)	#820701
	Stroke Risk in Children with Sickle Cell Disease - TCD Stoke Prevention in Sickle Cell Disease (STOP) Study, Transcranial Doppler (TCD) ultrasonography	#821001
	Stroke Risk in Children with Sickle Cell Disease - TCDi Imaging Transcranial Doppler (TCDi) ultrasonography	#821002
	Sustained and Selective Attention The Conners Continuous Performance Test 3 (CPT 3™)	#821201

Release Date:

July 30, 2015

Scope of Domain:

There is no scope information for this domain.

PhenX Sickle Cell Disease Senior Management Team

Carol M. Hamilton, PhD Principal Investigator RTI International Research Triangle Park, NC	Wayne Huggins, PhD Coordinator and WG Supervisor RTI International Research Triangle Park, NC
Tabitha P. Hendershot, BA Co-Investigator RTI International Washington, DC	Deborah Maiese, MPA Consensus Coordinator RTI International Research Triangle Park, NC
Tracey L. Grant, MS WG Manager RTI International Statistics and Epidemiology Division Research Triangle Park, NC	Amanda Riley, PMP, MBA Project Manager RTI International Research Triangle Park, NC
Erin M. Ramos, PhD, MPH Project Scientist National Human Genome Research Institute (NHGRI) Bethesda, MD	Brenda Iglesias, BA Scientific Program Analyst National Human Genome Research Institute (NHGRI) Scientific Program Analyst Bethesda, MD
Ellen M. Werner, PhD, MA Program Director National Heart, Lung, and Blood Institute (NHLBI) Blood Diseases Branch Bethesda, MD

Select	Measure Name	Protocols

Collection - Sickle Cell Disease

Research Domains:

Adaptive Behavior/Adaptive Function Vineland Adaptive Behavior Scales., 2nd ed. (VINELAND-II)

#820601

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), short form

#820201

Aspartate Aminotransferase Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

#811201

Bilirubin Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

#810901

Body Temperature - Oral Thermometers Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010

#810102

Body Temperature - Tympanic Thermometers Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010

#810101

Chest X-ray ACR-SPR, Practice Parameter for the Performance of Chest Radiography, 2014

#810201

Frequency of Sickle Cell Pain Episodes Per Year Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes

#830101

Haptoglobin Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

#810801

Hemoglobin Characterization Association of Public Health Laboratories (APHL)

#830302

History of Transfusion Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015

#830201

Intelligence Scale - 16 to 90 years Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV)

#820501

Intelligence Scale - 2 years, 6 months to 7 years, 7 months Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV)

#820502

Intelligence Scale - 6 to 16 years 11 months Wechsler Intelligence Scale for Children, 5th ed., (WISC)

#820503

Intelligence Scale - Birth to 3.5 years Bayley Scales of Infant and Toddler Development (BSID)

#820504

Lactate Dehydrogenase Level National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

#811001

Lung Function - Diffusion Capacity MacIntyre, N., et al. Standardization of the single-breath determination of carbon monoxide uptake in the lung. EUR RESPIR J, 2005

#810301

Lung Function - Lung Volume Wanger, J. et al. Standardization of the measurement of lung volumes. EUR RESPIR J, 2005

#810401

Marital Status of Primary Caregiver Silent Cerebral Infarct Multi-Center Clinical Trial (SIT), Demographic/Phenotypic Information

#840101

N-terminal Pro-brain Natriuretic Peptide (NT-proBNP) National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

#810501

NIH Stroke Scale (NIHSS) National Institutes of Health Stroke Scale (NIHSS)

#820801

Pediatric NIH Stroke Scale (PedNIHSS) Pediatric National Institutes of Health Stroke Scale (PedNIHSS)

#820802

Pediatric School Performance Pediatric Hydroxyurea, Phase III Clinical Trial (BABY HUG), Part VII: Education - School Questionnaire

#840201

PedsQL Sickle Cell Disease Module The PedsQL Sickle Cell Disease Module

#820202

Quality of Care - Adults The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Quality of Care Module

#820101

Quality of Care - Children Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Plan Survey 4.0, Child Medicaid Questionnaire

#820102

Recovery and Recurrence Questionnaire (RRQ) - Pediatrics The Recovery and Recurrence Questionnaire (RRQ)

#820702

Reticulocyte Count National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

#810601

Self-efficacy in Sickle Cell Disease The Sickle Cell Disease Self-Efficacy Scale (SCSES)

#820401

Serum or Plasma Ferritin National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009-2010

#811301

Stroke Impact Scale (SIS) - Adults The Stroke Impact Scale (SIS)

#820701

Stroke Risk in Children with Sickle Cell Disease - TCD Stoke Prevention in Sickle Cell Disease (STOP) Study, Transcranial Doppler (TCD) ultrasonography

#821001

Stroke Risk in Children with Sickle Cell Disease - TCDi Imaging Transcranial Doppler (TCDi) ultrasonography

#821002

Sustained and Selective Attention The Conners Continuous Performance Test 3 (CPT 3™)

#821201

Release Date:

Scope of Domain:

PhenX Sickle Cell Disease Senior Management Team

Adaptive Behavior/Adaptive Function
Vineland Adaptive Behavior Scales., 2nd ed. (VINELAND-II)

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)
Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), short form

Aspartate Aminotransferase Level
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

Bilirubin Level
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

Body Temperature - Oral Thermometers
Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010

Body Temperature - Tympanic Thermometers
Davie, A., et al. Best practice in the measureement of body temperature. NURS STAND, 2010

Chest X-ray
ACR-SPR, Practice Parameter for the Performance of Chest Radiography, 2014

Frequency of Sickle Cell Pain Episodes Per Year
Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes

Haptoglobin Level
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

Hemoglobin Characterization
Association of Public Health Laboratories (APHL)

History of Transfusion
Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015

Intelligence Scale - 16 to 90 years
Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV)

Intelligence Scale - 2 years, 6 months to 7 years, 7 months
Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV)

Intelligence Scale - 6 to 16 years 11 months
Wechsler Intelligence Scale for Children, 5th ed., (WISC)

Intelligence Scale - Birth to 3.5 years
Bayley Scales of Infant and Toddler Development (BSID)

Lactate Dehydrogenase Level
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

Lung Function - Diffusion Capacity
MacIntyre, N., et al. Standardization of the single-breath determination of carbon monoxide uptake in the lung. EUR RESPIR J, 2005

Lung Function - Lung Volume
Wanger, J. et al. Standardization of the measurement of lung volumes. EUR RESPIR J, 2005

Marital Status of Primary Caregiver
Silent Cerebral Infarct Multi-Center Clinical Trial (SIT), Demographic/Phenotypic Information

N-terminal Pro-brain Natriuretic Peptide (NT-proBNP)
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

NIH Stroke Scale (NIHSS)
National Institutes of Health Stroke Scale (NIHSS)

Pediatric NIH Stroke Scale (PedNIHSS)
Pediatric National Institutes of Health Stroke Scale (PedNIHSS)

Pediatric School Performance
Pediatric Hydroxyurea, Phase III Clinical Trial (BABY HUG), Part VII: Education - School Questionnaire

PedsQL Sickle Cell Disease Module
The PedsQL Sickle Cell Disease Module

Quality of Care - Adults
The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Quality of Care Module

Quality of Care - Children
Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Plan Survey 4.0, Child Medicaid Questionnaire

Recovery and Recurrence Questionnaire (RRQ) - Pediatrics
The Recovery and Recurrence Questionnaire (RRQ)

Reticulocyte Count
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011

Self-efficacy in Sickle Cell Disease
The Sickle Cell Disease Self-Efficacy Scale (SCSES)

Serum or Plasma Ferritin
National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009-2010

Stroke Impact Scale (SIS) - Adults
The Stroke Impact Scale (SIS)

Stroke Risk in Children with Sickle Cell Disease - TCD
Stoke Prevention in Sickle Cell Disease (STOP) Study, Transcranial Doppler (TCD) ultrasonography

Stroke Risk in Children with Sickle Cell Disease - TCDi
Imaging Transcranial Doppler (TCDi) ultrasonography

Sustained and Selective Attention
The Conners Continuous Performance Test 3 (CPT 3™)