Development and Validation of a Disability Severity Index for Charcot-Marie-Tooth Disease
Demographics (4)
- registration_age - Age (in days) at registration (phv00283845.v2.p1)
- start_age - Age (in days) at study start (phv00283844.v2.p1)
- Whatisyourageinyears - What is your age in years (phv00283821.v2.p1)
- Yourgender - Which best describes your gender (phv00283817.v2.p1)
Race and Ethnicity (7)
- Yourethnicity - Please select the best description of your ethnicity (phv00283816.v2.p1)
- Yourrace_AmericanIndianorAlaskaN - Yourrace: American Indian or Alaska Native (phv00283827.v2.p1)
- Yourrace_Asian - Yourrace: Asian (phv00283828.v2.p1)
- Yourrace_BlackorAfricanAmerican - Yourrace: Black or African American (phv00283829.v2.p1)
- Yourrace_NativeHawaiianorOtherPa - Yourrace: Native Hawaiian or Other Pacific Islander (phv00283830.v2.p1)
- Yourrace_Other - Yourrace: Other (phv00283831.v2.p1)
- Yourrace_White - Yourrace: White (phv00283835.v2.p1)
Other (60)
- BedboundDescriptor - Bed bound Descriptor (phv00283786.v2.p1)
- BedboundNumeric - Bed bound Numeric (where 0 = no disability and 10 = completely disabled) (phv00283787.v2.p1)
- CMTgenetictype - CMT genetic type (phv00283820.v2.p1)
- consent - Consent Group (phv00283776.v2.p1)
- DMCC_record_id - Data Managament Coordinating Center Internal Identifier (phv00283839.v2.p1)
- DoyouhaveCMT - Do you have CMT (phv00283818.v2.p1)
- Form_Name - Form name (phv00283836.v2.p1)
- Form_Status - Form Status (phv00283838.v2.p1)
- Identifyyourself_GeneticCounselo - Identifyyourself: Genetic Counselor (phv00283822.v2.p1)
- Identifyyourself_Other - Identifyyourself: Other (phv00283823.v2.p1)
- Identifyyourself_Patient - Identifyyourself: Patient (phv00283824.v2.p1)
- Identifyyourself_PhysicalTherapi - Identifyyourself: Physical Therapist (phv00283825.v2.p1)
- Identifyyourself_Physician - Identifyyourself: Physician (phv00283826.v2.p1)
- maskid - Masked Participant Identifier (phv00283777.v2.p1)
- maskid - Masked Participant Identifier (phv00283841.v2.p1)
- maskid - (Masked) Subject Identifier (unique key) (phv00283775.v2.p1)
- Protocol - RDCRN Protocol# (phv00283843.v2.p1)
- Status - Participant Status (phv00283842.v2.p1)
- Usesa4pointcaneDescriptor - Uses a 4point cane Descriptor (phv00283802.v2.p1)
- Usesa4pointcaneNumeric - Uses a 4point cane Numeric (where 0 = no disability and 10 = completely disabled) (phv00283803.v2.p1)
- UsesAnkleFootOrthosesonbothleg - Uses Ankle Foot Orthoses braces on both legs Descriptor (phv00283794.v2.p1)
- UsesAnkleFootOrthosesonbothleg2 - Uses Ankle Foot Orthoses braces on both legs Numeric (where 0 = no disability and 10 = completely disabled) (phv00283795.v2.p1)
- UsesAnkleFootOrthosesplus2cane - Uses Ankle Foot Orthoses braces plus 2 canes Descriptor (phv00283800.v2.p1)
- UsesAnkleFootOrthosesplus2cane2 - Uses Ankle Foot Orthoses braces plus 2 canes Numeric (where 0 = no disability and 10 = completely disabled) (phv00283801.v2.p1)
- UsesAnkleFootOrthosesplusa4poi - Uses Ankle Foot Orthosesleg braces plus a 4 point cane Descriptor (phv00283806.v2.p1)
- UsesAnkleFootOrthosesplusa4poi2 - Uses Ankle Foot Orthosesleg braces plus a 4 point cane Numeric (where 0 = no disability and 10 = completely disabled) (phv00283807.v2.p1)
- UsesAnkleFootOrthosesplusoneca - Uses Ankle Foot Orthosesbraces plus one cane Descriptor (phv00283798.v2.p1)
- UsesAnkleFootOrthosesplusoneca2 - Uses Ankle Foot Orthosesbraces plus one cane Numeric (where 0 = no disability and 10 = completely disabled) (phv00283799.v2.p1)
- UsesAnkleFootOrthosisononelegD - Uses Ankle Foot Orthosis AFO leg brace on one leg Descriptor (phv00283782.v2.p1)
- UsesAnkleFootOrthosisononelegN - Uses Ankle Foot Orthosis on one leg Numeric (where 0 = no disability and 10 = completely disabled) (phv00283783.v2.p1)
- UsesascooterallthetimeDescript - Uses a scooter all the time Descriptor (phv00283778.v2.p1)
- UsesascooterallthetimeNumeric - Uses a scooter all the time Numeric (where 0 = no disability and 10 = completely disabled) (phv00283779.v2.p1)
- UsesascooterDescriptor - Uses a scooter some times Descriptor (phv00283814.v2.p1)
- UsesascooterNumeric - Uses a scooter some times Numeric (where 0 = no disability and 10 = completely disabled) (phv00283815.v2.p1)
- UsesashoeinsertonbothfeetDescr - Uses a shoe insert or similar foot orthosis on both feet Descriptor (phv00283790.v2.p1)
- UsesashoeinsertonbothfeetNumer - Uses a shoe insert on both feet Numeric (where 0 = no disability and 10 = completely disabled) (phv00283791.v2.p1)
- UsesashoeinsertononefootDescri - Uses a shoe insert or similar foot orthosis on one foot Descriptor (phv00283784.v2.p1)
- UsesashoeinsertononefootNumeri - Uses a shoe insert or similar foot orthosis on one foot Numeric (where 0 = no disability and 10 = completely disabled) (phv00283785.v2.p1)
- UsesawalkerallthetimeDescripto - Uses a walker all the time Descriptor (phv00283808.v2.p1)
- UsesawalkerallthetimeNumeric - Uses a walker all the time Numeric (where 0 = no disability and 10 = completely disabled) (phv00283809.v2.p1)
- UsesawalkerplusAnkleFootOrthos - Uses a walker plus Ankle Foot Orthoses leg braces Descriptor (phv00283810.v2.p1)
- UsesawalkerplusAnkleFootOrthos2 - Uses a walker plus Ankle Foot Orthoses leg braces Numeric (where 0 = no disability and 10 = completely disabled) (phv00283811.v2.p1)
- UsesawalkersometimesDescriptor - Uses a walker some times Descriptor (phv00283780.v2.p1)
- UsesawalkersometimesNumeric - Uses a walker some times Numeric (where 0 = no disability and 10 = completely disabled) (phv00283781.v2.p1)
- UsesawheelchairDescriptor - Uses a wheelchair all the time Descriptor (phv00283812.v2.p1)
- UsesawheelchairNumeric - Uses a wheelchair all the time Numeric (where 0 = no disability and 10 = completely disabled) (phv00283813.v2.p1)
- UsesawheelchairsometimesDescri - Uses a wheelchair some times Descriptor (phv00283792.v2.p1)
- UsesawheelchairsometimesNumeri - Uses a wheelchair some times Numeric (where 0 = no disability and 10 = completely disabled) (phv00283793.v2.p1)
- UsesoneCaneDescriptor - Uses one Cane Descriptor (phv00283796.v2.p1)
- UsesoneCaneNumeric - Uses one Cane Numeric (where 0 = no disability and 10 = completely disabled) (phv00283797.v2.p1)
- UsestwocanesDescriptor - Uses two canes Descriptor (phv00283804.v2.p1)
- UsestwocanesNumeric - Uses two canes Numeric (where 0 = no disability and 10 = completely disabled) (phv00283805.v2.p1)
- Visit - Visit (phv00283837.v2.p1)
- visit_age - Computed Age (in days) at visit (where DOB provided) (phv00283840.v2.p1)
- WalksnoticeablydifferentlyDesc - Walks noticeably differently than other people but does not require any aid to walk Descriptor (phv00283788.v2.p1)
- WalksnoticeablydifferentlyNume - Walks noticeably differently Numeric (where 0 = no disability and 10 = completely disabled) (phv00283789.v2.p1)
- YourCMTthegenetictype - If yes please indicate if you know the genetic type for example CMT1A CMTX etc (phv00283819.v2.p1)
- Yourrace_Refused - Yourrace: Refused (phv00283832.v2.p1)
- Yourrace_Unknown - Yourrace: Unknown (phv00283833.v2.p1)
- Yourrace_Unknownornotreported - Yourrace: Unknown or not reported (phv00283834.v2.p1)