Patient
Advocate
Tomas
Silber, MD is the Research Subject Advocate (RSA) for the research
center and is available to answer questions for children and parents
participating in research
What
is an RSA?
An RSA is a professional trained to assist and advocate for children,
adolescents and their parents as they are participating in research
at Children's Hospital. Children's National Medical Center is proud
of its research and advocacy track record and is committed to both
scientific and ethical excellence. The RSA is completely independent
from the research scientist and investigators. He/she functions
as an advisor.
Why
an RSA?
The National Institutes of Health funds the RSA position to ensure
that the all investigators follow the federal regulations and policies
for the protections of human subjects participating in clinical
research. The RSA position assures that whoever participates in
research has maintained their legal rights to respectful, ethical
and completely voluntary and informed participation in the research.
Who
is the RSA?
Dr. Tomas Jose Silber, a board-certified pediatrician, sub-boarded
in Adolescent Medicine, with a master degree in bioethics from George
Washington University. Dr. Silber is also the Director of the Office
of Ethics at CNMC and is fluent in Spanish and German.
When
should we see the RSA?
Whenever you have a question or concern about how the research you
are participating in is conducted.
What
can the RSA do for you?
- He
assists families who need help when they are asked to sign an
informed consent* and any time thereafter.
- As
a matter of fact, you may see him around observing how the process
of obtaining your consent/assent is obtained, to ensure that it
is done to your satisfaction.
- Even
before the informed consent is given to you for signature, The
RSA has taken care of advising researchers on how to make sure
that the consent form explains to you all of the following:
-
any risk possible involved
- anticipated
benefit (to the participant and others)
- the
importance of the knowledge expected to result from the research
- the
procedures involved
- the
alternatives to participation
- confidentiality
- cost
(if any)
- compensation
- sharing
of findings
- assent
for minors (ages 7 to 17)**
- In
summary, the RSA's function is to collaborate with research subjects,
research staff and researchers in the common goal of assuring
research integrity.
Where
can the RSA be reached?
By phone: 202-476-3066
By E-mail: tsilber@cnmc.org
By appointment: at the PCRC - 3rd floor
How
does the RSA fulfill his advocacy duties?
- Reviewing
all PCRC protocols and consent forms prior to their submission
for approval by the GCRC scientific advisory committee.
- Advising
about consent language and ensuring appropriate translations and
availability of bilingual staff or translators when needed.
- Assisting
investigators in formulating and reviewing data and safety monitoring
plans.
- Providing
educational material for research subjects and their families.
- Functioning
as a liaison to the Institutional Review Board (IRB) that has
to approve all research projects at Children's National Medical
Center
- Monitoring
periodically all active PCRC protocols to assure that studies
are conducted in accordance with the IRB approved protocol and
monitoring plan.
- Ensuring
that any adverse event involving a clinical trial is reported
in accordance with NIH, FDA or other regulatory agency policies
and regulations.
- Addressing
potential conflicts of interest involving PCRC investigators.
- Designing
and implementing questionnaires for patients and parents participating
in research protocols (written or by interview) to learn: how
recruitment is perceived, how informed consent is understood,
the way assent is being obtained.
* "Informed consent is a process of information exchange, not
merely the procurement of signature on a form." (Children's
Hospital Institutional Review Board. Manual of Policies and Procedures).
Permission by a parent or legal guardian is required before any
child can participate in research (Consent). For this to be valid,
the research needs to be fully explained and risks, benefits and
alternatives should be disclosed (Informed). It is legally required.
** Assent is not a legal requirement, but it is a way of showing
respect for the will of children by explaining, in a way they can
understand, what their parents have consented to. For non-therapeutic
research, a minor's decision not to participate is valid and acceptable.
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