NIH Blueprint: The Human Connectome Project

Quick Reference: Open Access vs Restricted Data

For full details, see: HCP Data Release Documentation.

OPEN ACCESS DATA RESTRICTED ACCESS DATA

HCP Open Access data include brain imaging data (after defacing to remove identifying features) plus non-sensitive behavioral data. Investigators can view and use Open Access data by registering at db.humanconnectome.org and accepting the Open Access Data Use Terms, which includes an agreement to comply with institutional rules and regulations. 

Open Access Data Use Terms

Access to data that could potentially be used to identify HCP participants is strictly controlled. Only investigators that are deemed to have a legitimate research interest in this data, and who agree to the Restricted Access Data Use Terms, will be granted access. 

There are two tiers of restricted data, and therefore two tiers of restricted access.

  • Tier 1 Restricted Data refers to potentially identifying but non-sensitive information, such as Age (in years), Race/Ethnicity, and twin status.
  • Tier 1 Restricted Data Use Terms

  • Tier 2 Restricted Data refers to data that has a greater potential factor for allowing subjects to be identified, such as color vision and physiological data. Tier 2 also contains data that could be damaging to a subject if it became publicly known. This includes items such as drug/alcohol use and family psychological history.
Image Data RESTRICTED Image Data

All image data has been defaced and de-eared, and is considered open access data. 

  • MR Session data
  • Freesurfer Summary Stats
  • Freesurfer Volume Segmentation
  • Freesurfer Surface Area
  • Freesurfer Surface Thickness
N/A
Participant Demographic Data RESTRICTED Participant Demographic Data
  • Age group within a 5-year span (e.g. 21-25, 26-30)
  • Gender

These elements are Tier 1 Restricted

  • Age by year
  • Zygosity (twin status and twin type)
  • Family unit membership
  • Ethnicity
  • Race
  • Handedness

These elements are Tier 2 Restricted

  • Color vision and visual correction measures (TIER 2)
  • Body weight / BMI (TIER 2)
  • Height (TIER 2)
Participant Psychiatric, Substance Abuse, Life Function Data RESTRICTED Participant Screening Data

N/A

These elements are Tier 1 restricted

  • Life Function (Achenbach adult self-report)
  • DSM-oriented Scale

Each of these elements are Tier 2 restricted data.

  • Urine drug screen
  • HbA1c and TSH results
  • Psychiatric clinical symptoms (SSAGA interview)
  • Psychiatric or neurological illnesses of participants' parents
  • Substance use (self-report)
  • Nicotine dependence (Fagerstrom)
Participant Sensory and Physical Function RESTRICTED Participant Physical Function

Sensory

  • Audition (words in noise)
  • Olfaction (odor identification)
  • Pain (pain intensity & interference)
  • Taste (taste intensity)
  • Visual acuity (not available until Q3)
  • Visual contrast sensitivity (Mars contrast sensitivity)
Physical Function
  • Hematocrit levels

Each of these elements are Tier 2 restricted data.

  • Information on endocrine disorders and age of onset
  • Glucose levels (Hemoglobin A1c)
  • Menstrual cycle and hormonal status
  • Thyroid function
Participant Behavioral Data RESTRICTED Participant Behavioral Data

Alertness

  • Cognitive Status (MMSE)
  • Pittsburgh Sleep Questionnaire (PSQI)

Cognition

  • Episodic Memory (Picture Sequence Memory)
  • Executive Function/Cognitive Flexibility (Dimensional Change Card Sort)
  • Executive Function/Inhibition (Flanker Task)
  • Fluid Intelligence (Penn Progressive Matrices)
  • Language/Reading Decoding (Oral Reading Recognition)
  • Language/Vocabulary Comprehension (Picture Vocabulary)
  • Processing Speed (Pattern Completion Processing Speed)
  • Self-regulation/Impulsivity (Delay Discounting)
  • Spatial Orientation (Variable Short Penn Line Orientation Test)
  • Sustained Attention (Short Penn Continuous Performance Test)
  • Verbal Episodic Memory (Penn Word Memory Test)
  • Working Memory (List Sorting)†

Emotion

  • Emotion Recognition (Penn Emotion Recognition Test)
  • Negative Affect (Sadness, Fear, Anger)
  • Psychological Well-being (Positive Affect, Life Satisfaction, Meaning and Purpose)
  • Social Relationships (Social Support, Companionship, Social Distress, Positive Social Development)
  • Stress and Self Efficacy (Perceived Stress, Self-Efficacy)

Motor

  • Endurance (2 minute walk test)
  • Locomotion (4-meter walk test)
  • Motor Dexterity (9-hole Pegboard)
  • Strength (Grip Strength Dynamometry)

Personality

  • Five Factor Model (NEO-FFI)

Visual Processing

  • Color Vision (Farnsworth Test)