Appendix K - Certificate of Confidentiality

6710B ROCKLEDGE DRIVE
Rm 2158
Bethesda, MD 20817

5/16/2018
MDRC
Ms. Carolyn Hill
16 E 34th Street
19th Floor
New York, NY 10016
Dear Ms. Hill,
Enclosed is the Confidentiality Certificate, protecting the identity of research subjects in your singlesite/single-protocol project entitled “Understanding Poverty: Childhood ad Family Experiences”.
Please note that the Certificate expires on 07/30/2019.
Please be sure that the consent form given to research participants accurately states the intended uses of
personally identifiable information and the confidentiality protections, including the protection provided by the
Certificate of Confidentiality with its limits and exceptions.
If you determine that the research project will not be completed by the expiration date, 07/30/2019, you must
submit a written request for an extension of the Certificate three (3) months prior to the expiration date. If you
make any changes to the protocol for this study, you should contact me regarding modification of this
Certificate. Any requests for modifications of this Certificate must include the reason for the request,
documentation of the most recent IRB approval, and the expected date for completion of the research project.
Please advise me of any situation in which the certificate is employed to resist disclosure of information in
legal proceedings. Should attorneys for the project wish to discuss the use of the certificate, they may contact
the Office of the NIH Legal Advisor, National Institutes of Health, at (301) 496-6043.

Correspondence should be sent to:

Dennis Twombly Ph.D.
6710B ROCKLEDGE DRIVE
Rm 2158
Bethesda, MD 20817

Sincerely,

Approved Date: 05/16/2018

Dennis Twombly Ph.D.
Deputy Director OEP
Eunice Kennedy Shriver National Institute of Child
Health and Human Development

CONFIDENTIALITY CERTIFICATE
CC-HD-18-136

issued to
MDRC
conducting research known as
"Understanding Poverty: Childhood ad Family Experiences"
In accordance with the provisions of section 301(d) of the Public Health Service Act 42 U.S.C.
241(d), this Certificate is issued in response to the request of the Principal Investigator, Ms.
Carolyn Hill, to protect the privacy of research subjects by withholding their identities from all
persons not connected with this research. Ms. Carolyn Hill is primarily responsible for the
conduct of this research, which is funded by:
1. Other DHHS agency:ACF, OPRE
Under the authority vested in the Secretary of Health and Human Services by section 301(d), all
persons who:
1. are enrolled in, employed by, or associated with MDRC and its contractors or cooperating
agencies, and
2. have in the course of their employment or association access to information that would
identify individuals, who are the subjects of the research, pertaining to the project known as
“Understanding Poverty: Childhood ad Family Experiences”.
3. are hereby authorized to protect the privacy of the individuals, who are the subjects of that
research, by withholding their names and other identifying characteristics from all persons
not connected with the conduct of that research.
The goal of the Childhood and Family Experiences Study is to understand the perspectives of
both low-income children and their parents in order to inform ways in which social safety net
programs can better serve families living in poverty. The study will consist of a series of semistructured interviews with 30 families in three states. Each interview unit will be made up of one
to two parents/guardians and one or two children, yielding a total sample of approximately 45
adults and approximately 50 children (about 20 adolescents between the ages of 12 and 17 and
30 children between the ages of 7 and 11).
A Certificate of Confidentiality is needed because sensitive information will be collected during
the course of the study. The certificate will help researchers avoid involuntary disclosure that
could expose subjects or their families to adverse economic, legal, psychological and social
consequences.

All data containing PII will be stored on MDRC infrastructure. MDRC protects the systems with
anti-virus and anti-phishing software. Confidential, personal, or sensitive data will be encrypted
at rest on MDRC’s server. In addition, it is MDRC policy to encrypt data at rest on laptops that
are used to collect confidential, personal, or sensitive data onsite. MDRC’s Data Center in the
New York City office requires an authorized swipe card for access. All information that could
identify research participants will be protected. It will only be seen by researchers when they
need it. Both MDRC staff and subcontractors require all staff to sign a Confidentiality Pledge to
abide by the corporate policies on data security and confidentiality. This agreement affirms each
individual’s understanding of the importance of maintaining data security and confidentiality,
and abiding by the management and technical procedures that implement these policies.
This research begins on 09/30/2016 , and is expected to end on 07/30/2019.
As provided in section 301 (d) of the Public Health Service Act 42 U.S.C. 241(d):
"Persons so authorized to protect the privacy of such individuals may not be compelled in
any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings to
identify such individuals."
This Certificate does not protect you from being compelled to make disclosures that: (1) have
been consented to in writing by the research subject or the subject’s legally authorized
representative; (2) are required by the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 301 et
seq.) or regulations issued under that Act; or (3) have been requested from a research project
funded by NIH or DHHS by authorized representatives of those agencies for the purpose of audit
or program review.
This Certificate does not represent an endorsement of the research project by the Department of
Health and Human Services. This Certificate is now in effect and will expire on 07/30/2019. The
protection afforded by this Confidentiality Certificate is permanent with respect to any individual
who participates as a research subject (i.e., about whom the investigator maintains identifying
information) during the time the Certificate is in effect.

Sincerely,

Signed Date: 6/12/2018

Della Hann Ph.D.
Associate Director for Extramural Research
Eunice Kennedy Shriver National Institute of Child Health
and Human Development