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Protocols

PhenX Protocol Domain/Collection

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Blanchette et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost, 2014
Hemophilia Inhibitor

Maintenance of Balance, Independent Living, Intellect, and Zest in the Elderly of Boston (MOBILIZE Boston)
Geriatrics

Burden Assessment Scale (BAS)
Early Psychosis Clinical Services

Revised Conflict Tactics Scales (CTS 2), 2003
Social Environments

Conflict Tactics Scales: Parent-Child Version (CTS PC), 2003
Social Environments

Family Environment Scale (FES), 2009
Social Environments

Family Questionnaire (FQ)
Early Psychosis Clinical Services

Systematic Clinical Outcome Routine Evaluation (SCORE-15) Index of Family Functioning and Change
Early Psychosis Clinical Services

My Family Health Portrait (MFHP)
Rare Genetic Conditions

National Institute of Mental Health (NIMH), Family Interview for Genetic Studies (FIGS), 1999
Early Psychosis Translational Research

Family Interview for Genetic Studies (FIGS) - Abbreviated Version
Early Psychosis Translational Research

National Institute on Aging?(NIA),?Health and Retirement Study, Family History of Dementia and Longevity, 2016
Geriatrics

Multi-Ethnic Study of Arthrosclerosis (MESA) Exam 2, Family History
Diabetes

Womens Health Initiative (WHI), Family History Questionnaire, Version 3
Cardiovascular

Nulliparous Pregnancy Outcomes Study Monitoring Mothers-to-Be (nuMoM2b), Difficulties in Pregnancy, 2011
Pregnancy

Family History Questionnaire
Speech, Language and Hearing

Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV)
Assessment of Substance Use and Substance Use Disorders

Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV)
Assessment of Substance Use and Substance Use Disorders

Family Environment Scale (FES), 2009
Social Environments

Substance Abuse and Mental Health Services Administration (SAMHSA), Communities That Care (CTC) Youth Survey, 2004
Substance Use-related Psychosocial Risk Factors

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2007-2008
Diabetes

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2005-2006
Diabetes

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedures Manual, 2007
Diabetes

Fear of Cancer Recurrence (FCR7)
Cancer Outcomes and Survivorship

Hadlock, F.P., et al. Racial/ethnic standards for fetal groth: the NICHD Fetal Growth Studies. Am J Obstet Gynecol, 2015
Pregnancy

National Health Interview Survey (NHIS) Diet and Nutrition Questionnaire, 2005
Nutrition and Dietary Supplements

Medical Expenditure Panel Survey (MEPS), Experiences with Cancer Self-Administered Questionnaire (SAQ), 2011
Cancer Outcomes and Survivorship

Population Assessment of Tobacco and Health (PATH) Study, Adult Extended Interview
Tobacco Regulatory Research Core: Tier 2

Population Assessment of Tobacco and Health (PATH) Study, Youth Extended Interview
Tobacco Regulatory Research Core: Tier 2

National Health Interview Survey (NHIS), Dental Care, 1983 & 1989
Oral Health

U.S. Household Food Security Survey Module: Six-Item Short Form, Economic Research Service, USDA, 2012
Socioeconomic

Traditional Retail Food Environment Index (RFEI)
Structural Social Determinants of Health

Framingham Foot Assessment Clinical Tool
Geriatrics

Study of Osteoporotic Fractures (SOF), History of Fractures Questionnaire & Framingham Osteoporosis Study Fracture Assessment
Bone and Joint

National Institute on Aging (NIA), Study of Osteoporotic Fractures (SOF), Frailty Index
Geriatrics

National Health and Nutrition Examination Survey (NHANES), 2003-2004
Obesity

Hiemstra, M., et al. Smoking-specific parenting and smoking onset in adolescence: The role of genes from the Dopaminergic system (DRD2, DRD4, DAT1 genotypes). PLOS ONE, 2013
Tobacco Regulatory Research - Host: Social/Cognitive

Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes
Sickle Cell Disease Core: Tier 1

National Health Interview Survey (NHIS) Diet and Nutrition Questionnaire, 2005
Nutrition and Dietary Supplements

Karnofsky Performance Status Scale (KPS)
Cancer Outcomes and Survivorship

Gastroesophageal Reflux Disease Questionnaire (GerdQ)
Gastrointestinal

All of Us Research Program, Participant Provided Information (PPI), 2018
Demographics

The K6
Psychiatric

Generalized Self-Efficacy Scale
Psychosocial

The Self-Efficacy Questionnaire for Children (SEQ-C)
Psychosocial

The General Well Being Schedule (GWB)
Post-traumatic Stress Psychopathology (including PTSD)

Boston Medical Center, Extremely Low Gestational Age Newborns (ELGAN) Study, Maternal Interview, 2002
Pregnancy

Project Gestational Age
Pregnancy

Nulliparous Pregnancy Outcomes Study Monitoring Mothers-to-Be (nuMoM2b): CLA Prenatal Labs, Version 04
Pregnancy

Montreal Cognitive Assessment (MOCA?)
Neurology

The Ages & Stages Questionnaires?, Third Edition (ASQ-3?)
Neurology

Children?s Global Assessment Scale (CGAS)
Neurology

Brief Psychiatric Rating Scale
Psychiatric

Positive and Negative Syndrome Scale (PANSS)
Psychiatric

National Health and Nutrition Examination Survey (NHANES), Oral Glucose Tolerance Test (OGTT) Manual, 2007-2008
Diabetes

Definition of Flare in Patients with Established Gout
Bone and Joint

Center for International Blood and Marrow Transplant Research (CIBMTR),Form 2450 (R5.0) Post-Transplant Essential Data, 2021
Curative Therapies

Clinical Evaluation of Language Fundamentals? (CELF?-5), Recalling sentences subtest
Speech, Language and Hearing

Rice Grammaticality Judgment Task
Speech, Language and Hearing

Rice/Wexler Test of Early Grammatical Impairment (TEGI)
Speech, Language and Hearing

National Health and Nutrition Examination Survey (NHANES),?Muscle Strength Procedures Manual, 2013-2014
Physical Activity and Physical Fitness

Gross Motor Function Classification System Family Report Questionnaire (GMFCS)
Neurology

Gross Motor Function Classification System (GMFCS), Family Report Questionnaire
Neurology

Gross Motor Function Classification System (GMFCS), Family Report Questionnaire
Neurology

World Health Organization (WHO) & Centers for Disease Control and Prevention (CDC) growth charts
Rare Genetic Conditions

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Obesity

Edinburgh Handedness Inventory
Anthropometrics

Avon Longitudinal Study of Parents and Children Protocol (ALSPAC) & Edinburgh Handedness Inventory, 2004
Anthropometrics

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2011
Cardiovascular, Pulmonary, and Renal

Early Life Exposure Assessment Tool (ELEAT), 2015
Pregnancy

COVID-19 Community Response Survey
History, Treatment and Outcomes

Short Inflammatory Bowel Disease Questionnaire (SIBDQ)?, 1989
Gastrointestinal

Health Reform Monitoring Survey, 2015
Demographics

Short Assessment of Health Literacy-English (SAHL-E) and
Chew, L. D., et al. Brief questions to identify patients with inadequate health literacy. Fam Med, 2004
Individual Social Determinants of Health

Numeracy Understanding in Medicine Instrument (NUMi)
Individual Social Determinants of Health

EQ-5D-3L
Neurology, Quality of Life, and Health Services

EuroQol Group - EQ-5D-Y
Neurology, Quality of Life, and Health Services

Multi-Ethnic Study of Atherosclerosis (MESA), Neighborhood Section, 2000
Social Environments

Digits in Noise Test (DIN)
Speech, Language and Hearing

Cardiovascular Health Study (CHS), Baseline Medical History Questionnaire & Framingham Heart Study (FHS)
Cardiovascular

Heaviness of Smoking Index (HSI)
Smoking Cessation, Harm Reduction and Biomarkers

The Snaith-Hamilton Pleasure Scale (SHAPS)
Tobacco Regulatory Research - Host: Social/Cognitive

National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988
Anthropometrics

National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988
Anthropometrics

National Health and Nutritional Examination Survey (NHANES) Weight History Questionnaire, 2007
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2007
Anthropometrics

The Laboratory Diagnosis of Haemoglobinopathies, 1998
Sickle Cell Disease Core: Tier 1

Hemophilia Joint Health Score (HJHS), 2.1
Hemophilia Inhibitor

Hemophilia Activities List (HAL)
Hemophilia Inhibitor

Pediatric Hemophilia Activities List (PedHAL)
Hemophilia Inhibitor

National Health and Nutrition Examination Survey (NHANES), Laboratory Procedure Manual, 2007 & U.S. Food and Drug Administration (FDAs) approved laboratory assays, 2009
Infectious Diseases and Immunity

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2009
Infectious Diseases and Immunity

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

Coronary Artery Risk Development in Young Adults (CARDIA), Y20 CARDIA VII, Pregnancy Questionnaire
Cardiovascular

National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988
Anthropometrics

National Institutes of Health (NIH), Long Island Breast Cancer Study, 1996
Environmental Exposures

National Immunization Survey (NIS), 2013
Environmental Exposures

The Ohio State University Traumatic Brain Injury Identification Method Short Form (OSU TBI-ID)
Neurology

Black Women?s Health Study (BWHS), 1995
Reproductive Health

Study for Future Families (SFF) & National Longitudinal Survey of Youth (NLSY)
Reproductive Health

Jackson Heart Study (JHS)
Neurology

National Health Interview Survey (NHIS), sample adult cancer supplement questionnaire, 2000
Tobacco Regulatory Research: Agent

Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015
Sickle Cell Disease Core: Tier 1

Finnish Environment and Asthma Study, 1997-2000
Environmental Exposures

The Hopelessness Scale for Children (HSC)
Suicide

The Beck Hopelessness Scale (BHS)
Suicide

Nurses? Health Study II (NHS II), 2015
Reproductive Health

Population Assessment of Tobacco and Health (PATH) Study, Wave 1, Adult Extended Interview 7.5
Tobacco Regulatory Research - Host: Social/Cognitive

Confusion, Hubbub, and Order Scale (CHAOS)
Pediatric Development

General Social Survey (GSS), Household Enumeration Form (HEF) Roster, 2014
Demographics

National Health and Nutrition Examination Survey Questionnaire (NHANES), Laboratory Procedures Manual, 2007
Infectious Diseases and Immunity

Type 1 Diabetes Genetics Consortium (T1DGC), Manual Of Operations. Blood Collection and Processing, 2010
Infectious Diseases and Immunity

Behavioral Risk Factor Surveillance System (BRFSS), 2014
Reproductive Health

Pricing Policies and Control of Tobacco in Europe (PPACTE) Study
Tobacco Regulatory Research: Vector

My Personal Health Record (MyPHR), Adult PHR Form, 2006
Infectious Diseases and Immunity

Williams, P. B., et al, Analytic precision and accuracy of commercial immunoassays for specific IgE: Establishing a standard, J ALLERGY CLIN IMMUN, 2000
Respiratory

The Columbia Impairment Scale (CIS)
Neurology, Quality of Life, and Health Services

The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)
Neurology, Quality of Life, and Health Services

The CollaboRATE questionnaire
Early Psychosis Clinical Services

National Survey on Drug Use and Health (NSDUH), 2014
Early Psychosis Clinical Services

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Hemophilia Inhibitor

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001
Hemophilia Inhibitor

Adcock Funk et al., Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Adcock Funk et al. Quality standards for sample processing, transportation, and storage in hemostasis testing. Semin Thromb Hemost, 2012
Hemophilia Inhibitor

Lee et al., Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001.
Hemophilia Inhibitor

Lee et al. Scientific and Standardization Committee Communication: The Design and Analysis of Pharmacokinetic Studies of Coagulation Factors. ISTH, 2001
Hemophilia Inhibitor

Information Seeking V2 from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results)
Genomic Medicine Implementation

STOP-IT task
Substance Use-related Neurobehavioral and Cognitive Risk Factors

National Health and Nutrition Examination Survey (NHANES), 2007-2008, Drugs Use Questionnaire
Infectious Diseases and Immunity

The Insomnia Severity Index (ISI)
Suicide

The Presidents Challenge Adult Fitness Test, 2008 & Fitness Testing and Assessment Manual 4th ed. YMCA, 2000
Physical Activity and Physical Fitness

FITNESSGRAM?/ACTIVITYGRAM Test Administration Manual, 2007
Physical Activity and Physical Fitness

Functional fitness test for community-residing older adults
Physical Activity and Physical Fitness

Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV)
Neurology, Quality of Life, and Health Services

Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV)
Neurology, Quality of Life, and Health Services

Wechsler Intelligence Scale for Children, 5th ed., (WISC)
Neurology, Quality of Life, and Health Services

Bayley Scales of Infant and Toddler Development (BSID)
Neurology, Quality of Life, and Health Services

The Suicidal Ideation Questionnaire-Junior (SIQ-JR)
Suicide

The Scale for Suicide Ideation (SSI)
Suicide

Global Appraisal of Individual Needs-Short Screener (GAIN-SS)
Substance Abuse and Addiction Core: Tier 2

Centers for Disease Control and Prevention (CDC), GeoSentinel Questionnaire, 2008
Infectious Diseases and Immunity

Evaluation of the Public Education Campaign on Teen Tobacco (ExPECTT-B) questionnaire
Tobacco Regulatory Research: Environment

Diagnostic Infant and Preschool Assessment (DIPA)
Pediatric Development

The Intolerance of Uncertainty Scale (IUS)
Eating Disorders

University of Southern California, The Los Angeles Latino Eye Study (LALES), 2000-2003
Ocular

Health, Aging, and Body Composition Study (Health ABC), Weight History, Version 1.1a
Geriatrics

National Health Examination Survey (NHANES) Lab Procedures Manual, 2011-2012
Nutrition and Dietary Supplements

General Social Survey (GSS), 2018
Socioeconomic

Job Content Questionnaire (JCQ)
Social Environments