Da a De -Id e n i ica io n Guidance
The main goal o da a de-iden i ica ion is o p o ec s udy pa icipan s’ iden i y and p i acy. The e a e
se e al app oaches used o de-iden i y da a such as edac ing, masking, and ecoding di ec iden i ie s
o anonymize pa icipan s om a esea ch s udy.
• Redac ing may include emo ing o dele ing an en i e a iable om a da ase (e.g., pa icipan
phone numbe ), o a pa icipan ’s da a in a s udy (e.g., due o lack o consen o da a sha ing)
• Masking may include eplacing da a wi h an anonymized indica o o symbol (e.g., “James Smi h
admi ed o hospi al 2 hou s a e ea men ” “[Name] / XXXXX admi ed o hospi al 2 hou s a e
ea men ”)
• Recoding may include applying a andom code o anonymize da a (e.g., changing si e names om
“Mon gome y Hospi al” o “1”, and “Yo k Hospi al” o “2”)
The gene al p ocess when de-iden i ying da a is o de e mine he da a/ a iables o de-iden i y o
pe sonally iden i iable in o ma ion (PII) and p o ec ed heal h in o ma ion (PHI), pe o m de-
iden i ica ion by applying a ious de-iden i ica ion echniques, and documen he de-iden i ica ion
p ocedu es o aceabili y, eplicabili y, and accoun abili y.
The (C)DCCs a e esponsible o de-iden i ying da a be o e submi ing o he RADx Da a Hub and should
p ese e as much da a as possible o e ain he scien i ic alue, sa egua d eplicabili y, p omo e
meaning ul seconda y use, and accommoda e a wide ange o po en ial u u e esea ch by he scien i ic
esea ch communi y. The (C)DCCs de-iden i y RADx da a o di ec iden i ie s (e.g., names, add esses)
and also based on he ollowing guidelines:
• Zip codes – Consis en wi h Sec ion 164.514(b) o he Heal h Insu ance Po abili y and
Accoun abili y Ac (HIPAA) P i acy Rule/Sa e Ha bo Me hod1, he i s 3-digi s o a zip code a e
pe missible o e ain in he da a. Howe e , he e a e 17 es ic ed zip codes, which acco ding o
Census, ha e a popula ion o 20,000 o ewe pe sons ha should be changed o “000” in he da a.
The 17 es ic ed ZIP codes a e: 036, 692, 878, 059, 790, 879, 063, 821, 884, 102, 823, 890, 203, 830,
893, 556, and 831.
o No e: Fo s udies ha do no ha e any pa icipan s (e.g., was ewa e s udies), 5-digi zip
codes a e pe missible.
• Da es – Full da es a e allowed o be submi ed o he RADx Da a Hub wi h he da e shi ed by a
cons an numbe o days in e al (e.g., add 5 days o all da es o a pa icipan ). I he popula ion is
e y small (i.e., unde 20 pa icipan s), all da es should be obscu ed o only con ain he yea .
• Si es – Si es wi hin a s udy should be coded wi h a andom ID o anonymize speci ic loca ions bu
s ill allow o si e-le el analyses.
• Ages – I a pa icipan is less han one yea old, he age will be lis ed as “0”. Fo pa icipan s 21 o 89
yea s old, he age will be shi ed o +/- 2 yea s. Fo pa icipan s 90 yea s and olde , he age will be
lis ed as “90”.
1 Guidance Rega ding Me hods o De-iden i ica ion o P o ec ed Heal h In o ma ion in Acco dance wi h
he Heal h Insu ance Po abili y and Accoun abili y Ac (HIPAA) P i acy Rule
(h ps://www.hhs.go /hipaa/ o -p o essionals/p i acy/special- opics/de-iden i ica ion/index.h ml)
