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NIMH Data Archive
NDA ABCD CCF OAI NIAAADA AMP SCZ HEAL

Physician Initial History Form

958 Shared Subjects

N/A
Clinical Assessments
Med History
09/12/2016
pihf01
09/12/2016
View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Description Value Range Notes Aliases
subjectkey GUID Required The NDAR Global Unique Identifier (GUID) for research subject NDAR*
src_subject_id String 20 Required Subject ID how it's defined in lab/project
interview_date Date Required Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY
interview_age Integer Required Age in months at the time of the interview/test/sampling/imaging. 0::1440 Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported gender
Query abnormaldev Integer Recommended Had abnormal developmental in the first 6 months of life 0;1; 999 1=Yes;0= No; 999=Not known
Query angelmanlike Integer Recommended Angelman-like happy puppet excitable flapping 0;1; 999 1=Yes;0= No; 999=Not known
Query autisticbehaviors Integer Recommended Presence of autistic behaviors 0;1; 999 1=Yes;0= No; 999=Not known
Query braininjury Integer Recommended Experienced a brain injury before or after birth metabolic infection 0;1; 999 1=Yes;0= No; 999=Not known
Query breathingdisturbances Integer Recommended Breathing disturbances when awake 0;1 1=Yes; 0=No
Query bruxism Integer Recommended Bruxism when awake 0;1 1=Yes; 0=No
cdkl5mutationsother String 100 Recommended CDKL5 Mutations Other
Query cdkl5mutations_a40v Integer Recommended CDKL5Mutations: A40V 0; 1 0 = unchecked box; 1 = checked box
Query cdkl5mutations_other Integer Recommended CDKL5Mutations: Other 0; 1 0 = unchecked box; 1 = checked box
Query cdkl5mutations_q791ppol Integer Recommended CDKL5Mutations: Q791P (polymorphism) 0; 1 0 = unchecked box; 1 = checked box cdkl5mutations_q791ppolymorphism
Query cdkl5mutations_r59x Integer Recommended CDKL5Mutations: R59X 0; 1 0 = unchecked box; 1 = checked box
Query cdkl5mutations_r952xpol Integer Recommended CDKL5Mutations: R952X (polymorphism) 0; 1 0 = unchecked box; 1 = checked box cdkl5mutations_r952xpolymorphism
Query commecp2del_1157del41 Integer Recommended CommonMECP2Deletions: 1157del41 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_1157del41
Query commecp2del_1157del44 Integer Recommended CommonMECP2Deletions: 1157del44 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_1157del44
Query commecp2del_1163del26 Integer Recommended CommonMECP2Deletions: 1163del26 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_1163del26
Query commecp2del_1163del35 Integer Recommended CommonMECP2Deletions: 1163del35 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_1163del35
Query commecp2del_1164del44 Integer Recommended CommonMECP2Deletions: 1164del44 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_1164del44
Query commecp2del_1168del6 Integer Recommended CommonMECP2Deletions: 1168del6 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_1168del6
Query commecp2del_710del1 Integer Recommended CommonMECP2Deletions: 710del1 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_710del1
Query commecp2del_806del1 Integer Recommended CommonMECP2Deletions: 806del1 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_806del1
Query commecp2del_807del1 Integer Recommended CommonMECP2Deletions: 807del1 0; 1 0 = unchecked box; 1 = checked box commonmecp2deletions_807del1
Query commecp2mut_c298gl100v Integer Recommended CommonMECP2Mutations: C298G(L100V) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c298gl100v
Query commecp2mut_c302gp101r Integer Recommended CommonMECP2Mutations: C302G(P101R) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c302gp101r
Query commecp2mut_c316tr106w Integer Recommended CommonMECP2Mutations: C316T(R106W) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c316tr106w
Query commecp2mut_c397tr133c Integer Recommended CommonMECP2Mutations: C397T(R133C) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c397tr133c
Query commecp2mut_c401gs134c Integer Recommended CommonMECP2Mutations: C401G(S134C) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c401gs134c
Query commecp2mut_c421gy141x Integer Recommended CommonMECP2Mutations: C421G(Y141X) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c421gy141x
Query commecp2mut_c423gy141x Integer Recommended CommonMECP2Mutations: C423G(Y141X) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c423gy141x
Query commecp2mut_c455gp152r Integer Recommended CommonMECP2Mutations: C455G(P152R) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c455gp152r
Query commecp2mut_c468gd156e Integer Recommended CommonMECP2Mutations: C468G(D156E) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c468gd156e
Query commecp2mut_c473tt158m Integer Recommended CommonMECP2Mutations: C473T(T158M) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c473tt158m
Query commecp2mut_c502tr168x Integer Recommended CommonMECP2Mutations: C502T(R168X) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c502tr168x
Query commecp2mut_c674gp225r Integer Recommended CommonMECP2Mutations: C674G(P225R) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c674gp225r
Query commecp2mut_c763tr255x Integer Recommended CommonMECP2Mutations: C763T(R255X) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c763tr255x
Query commecp2mut_c808tr270x Integer Recommended CommonMECP2Mutations: C808T(R270X) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c808tr270x
Query commecp2mut_c880tr294x Integer Recommended CommonMECP2Mutations: C880T(R294X) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c880tr294x
Query commecp2mut_c916tr306c Integer Recommended CommonMECP2Mutations: C916T(R306C) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c916tr306c
Query commecp2mut_c965tp322l Integer Recommended CommonMECP2Mutations: C965T(P322L) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_c965tp322l
Query commecp2mut_g317ar106q Integer Recommended CommonMECP2Mutations: G317A(R106Q) 0; 1 0 = unchecked box; 1 = checked box commonmecp2mutations_g317ar106q
Query rett_dx Integer Recommended Rett related Diagnosis 1::13 1=Classic Rett syndrome (4 main criteria, no core exclusion criteria); 2=Atypical/variant unspecified Rett syndrome; 3=Atypical Delayed Onset Variant Rett syndrome; 4=Atypical Preserved Speech (Zapella) Variant Rett syndrome; 5=Atypical Early Seizure (Handfeld) Variant Rett syndrome; 6=Atypical Congenital (Rolando) Variant Rett syndrome; 7=Other MECP2 mutation-positive Non-Rett (including normal phenotype); 8=MECP2 duplication; 9=FOXG1 disorder; 10==FOXG1 duplication; 11=CDKL5 disorder; 12=CDKL5 duplication; 13=Other diagnosis
Query diminishedresp2pain Integer Recommended Diminished response to pain 0;1 1=Yes; 0=No
Query dxagedatedd Integer Recommended Rett dx Age specific date day
Query dxagedatemm Integer Recommended Rett dx Age specific date month 1::12 1=Jan; 2=Feb; 3=Mar; 4=Apr; 5=May; 6=Jun; 7=Jul; 8=Aug; 9=Sep; 10=Oct; 11=Nov; 12=Dec
Query dxagedateyy Integer Recommended Rett dx Age specific date year
Query dxagemonths Integer Recommended Rett dx Age months
Query dxagena Integer Recommended Rett dx Not applicable if this is an unaffected individual age at diagnosis 0; 1 0 = unchecked box; 1 = checked box
Query dxageyears Integer Recommended Rett dx Age years
Query aut_related String 10 Recommended Is there an Autism related diagnosis Yes; No; Not known dxautism
Query dxdatedd Integer Recommended Diagnosis of autism day
Query dxdatemm Integer Recommended Diagnosis of autism month 1::12 1=Jan; 2=Feb; 3=Mar; 4=Apr; 5=May; 6=Jun; 7=Jul; 8=Aug; 9=Sep; 10=Oct; 11=Nov; 12=Dec
Query dxdateyyyy Integer Recommended Diagnosis of autism year
Query dxmadeby Integer Recommended Diagnosis made by 1::13 1=Neurologist; 2=Developmental Pediatrician; 3=Pediatrician; 4=Geneticist; 5=Psychiatrist; 6=Psychologist; 7=Family Practitioner; 8=Therapist; 9=Teacher; 10=Family Member; 11=Other Subspecialist; 12=Specific physician; 13=Other
Query dxmadebyna Integer Recommended Diagnosis made by Not applicable if this is an unaffected individual 0; 1 0 = unchecked box; 1 = checked box
diag_diagnosismadeby_otr String 4,000 Recommended Diagnosis made by Other specified dxmadebyotherspecify
dxothermutationspecify String 150 Recommended Diagnosis Other Mutation Specify
Query dxother_autistic Integer Recommended DxOther: Autistic 0; 1 0 = unchecked box; 1 = checked box
Query cfmh_othr_devdelay Integer Recommended Developmental Delay 1;0 0 = No; 1 = Yes dxother_developmentaldelay
Query dxother_infencephal Integer Recommended DxOther: Infantile encephalopathy 0; 1 0 = unchecked box; 1 = checked box dxother_infantileencephalopathy
Query dxother_learndisab Integer Recommended DxOther: Learning Disabilities 0; 1 0 = unchecked box; 1 = checked box dxother_learningdisabilities
Query dxother_normal Integer Recommended DxOther: Normal 0; 1 0 = unchecked box; 1 = checked box
Query dxother_other Integer Recommended DxOther: Other 0; 1 0 = unchecked box; 1 = checked box
Query earlyonsetseizures Integer Recommended Early onset seizures 5 months 0;1; 999 1=Yes;0= No; 999=Not known
Query encephalopathy Integer Recommended Early 4 months severe postnatal encephalopathy 0;1; 999 1=Yes;0= No; 999=Not known
Query epilepsy Integer Recommended Myoclonic epilepsy refractory to treatment 0;1; 999 1=Yes;0= No; 999=Not known
foxg1mutationsother String 150 Recommended Common FOXG1 mutations Other
Query foxg1mutations_560dupg Integer Recommended FOXG1Mutations: 560dupG 0; 1 0 = unchecked box; 1 = checked box
Query foxg1mutations_n253d Integer Recommended FOXG1Mutations: N253D 0; 1 0 = unchecked box; 1 = checked box
Query foxg1mutations_other Integer Recommended FOXG1Mutations: Other 0; 1 0 = unchecked box; 1 = checked box
Query gaitabnormalities Integer Recommended Gait abnormalities 0::2; 999 2=No Gait; 1=Yes; 0=No; 999=Not Known
Query genetictestlab Integer Recommended Indicate the lab that performed the genetic test 1::14 1=Baylor College; 2=Boston Children's Hospital; 3=Greenwood Genetic Center; 4=Boston University; 5=Athena Diagnostics; 6=Lab Corp; 7=Quest Diagnostics; 8=University of Chicago; 9=Children's National; 10=ARUP; 11=Duke;12= Emory Genetics; 13=Other; 14 =GeneDx
Query growthretardation Integer Recommended Growth retardation 0;1 1=Yes; 0=No
Query inappropriatelaughing Integer Recommended Inappropriate laughingscreaming spells 0;1 1=Yes; 0=No
Query intenseeyepointing Integer Recommended Intense eye communication eye pointing 0;1 1=Yes; 0=No
labother String 100 Recommended Indicate the lab that performed the genetic test Other
labresultsnotscannedexplain String 150 Recommended Gene test results deidentified and scanned into database If no explain
Query labresultsscanned Integer Recommended Gene test results deidentified and scanned into database 0;1 1=Yes; 0=No
Query lossofhandskills Integer Recommended Loss of acquired purposeful hand skills 0;1 1=Yes; 0=No
Query lossofspokenlanguage Integer Recommended Loss of acquired spoken language including babbling 0;1 1=Yes; 0=No
Query lowerbodytemp Integer Recommended Lower Baseline Body Temperature 0;1; 999 1=Yes;0= No; 999=Not known
Query mcp2duplications Integer Recommended MECP2 Duplications 0; 1 0 = unchecked box; 1 = checked box
Query mecp2largedeletions_exon12 Integer Recommended MECP2LargeDeletions: Exon 1+2 0; 1 0 = unchecked box; 1 = checked box
Query mecp2largedeletions_exon14 Integer Recommended MECP2LargeDeletions: Exon 1-4 0; 1 0 = unchecked box; 1 = checked box
Query mecp2largedeletions_exon3 Integer Recommended MECP2LargeDeletions: Exon 3 0; 1 0 = unchecked box; 1 = checked box
Query mecp2largedeletions_exon34 Integer Recommended MECP2LargeDeletions: Exon 3+4 0; 1 0 = unchecked box; 1 = checked box
Query mecp2largedeletions_exon4 Integer Recommended MECP2LargeDeletions: Exon 4 0; 1 0 = unchecked box; 1 = checked box
Query microcephaly String 10 Recommended This individual has a head circumference smaller than 2 standard deviations below the mean for gender and age TRUE; FALSE; UNKNOWN
Query muscletone Integer Recommended Abnormal muscle tone 0;1 1=Yes; 0=No
Query mutation Integer Recommended Indicate if there is a mutation in MECP2 CDKL5 FOXG1 or there is a MECP2 duplication 0::2 1=Yes; 0=No; 2=Pending
mutationpendingexplain String 25 Recommended MECP2 CDKL5 FOXG1 MECP2 duplication mutation pending result explain
Query mutationtestdd Integer Recommended If pending indicate date test was sent DDMMMYYYY day
Query mutationtestmm Integer Recommended If pending indicate date test was sent DDMMMYYYY month 1::12 1=Jan; 2=Feb; 3=Mar; 4=Apr; 5=May; 6=Jun; 7=Jul; 8=Aug; 9=Sep; 10=Oct; 11=Nov; 12=Dec
Query mutationtestyy Integer Recommended If pending indicate date test was sent DDMMMYYYY year
Query organomegaly Integer Recommended Organomegaly 0;1; 999 1=Yes;0= No; 999=Not known
Query othermcp2dup_flna Integer Recommended OtherMCP2Duplication: FLNA 0; 1 0 = unchecked box; 1 = checked box othermcp2duplication_flna
Query othermcp2dup_irak1 Integer Recommended OtherMCP2Duplication: IRAK1 0; 1 0 = unchecked box; 1 = checked box othermcp2duplication_irak1
Query othermcp2dup_l1cam Integer Recommended OtherMCP2Duplication: L1CAM 0; 1 0 = unchecked box; 1 = checked box othermcp2duplication_l1cam
othermcp2mutations String 150 Recommended 2d Other MECP2 Mutations not listed above and including all insertions
Query othermecp2mutations Integer Recommended Other MECP2 Mutations 0; 1 0 = unchecked box; 1 = checked box
Query periodofregression Integer Recommended Period of regression followed by stabilizationrecovery 0;1 1=Yes; 0=No
Query recurrentinfectionsongoing String 5 Recommended Recurrent infections ie 2 pneumonia or sinus infections per year 8 OM per year abscesses Ongoing Yes; No; NK reccurrrespirinfections
Query dx_regression Integer Recommended Early 5 months regression 0;1; 999 1=Yes;0= No; 999=Not known regression
Query regressionagemonths Integer Recommended Age at Regression month
Query regressionageyears Integer Recommended Age at Regression years
Query regressiondatedd Integer Recommended Age at Regression Date Day
Query regressiondatemm Integer Recommended Age at Regression Date Month 1::12 1=Jan; 2=Feb; 3=Mar; 4=Apr; 5=May; 6=Jun; 7=Jul; 8=Aug; 9=Sep; 10=Oct; 11=Nov; 12=Dec
Query regressiondateyy Integer Recommended Age at Regression Date Year
Query regressionna Integer Recommended Age at Regression Not applicable 0; 1 0 = unchecked box; 1 = checked box
Query retardation Integer Recommended Growth retardation before birth 0;1; 999 1=Yes;0= No; 999=Not known
Query retinopathy Integer Recommended Retinopathy 0;1; 999 1=Yes;0= No; 999=Not known
Query scoliosis Integer Recommended Scoliosiskyphosis 0;1 1=Yes; 0=No
Query disruptedslee String 10 Recommended Disrupted sleep pattern Yes; No; Unknown sleeppattern
Query cold_handfeet String 6 Recommended Does (did) the Child have Cold or clammy hands and feet, even in normal ambient temperature? TRUE;FALSE smallcoldhands
Query spasms Integer Recommended Presence of infantile spasms 0;1; 999 1=Yes;0= No; 999=Not known
Query stereotypichandmovements Integer Recommended Stereotypic or repetitive hand movements 0;1 1=Yes; 0=No
Query vasomotordisturbance Integer Recommended Peripheral vasomotor disturbance 0;1 1=Yes; 0=No
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

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