Full Text HD-93-014

ETHNIC MINORITY FAMILIES WITH RETARDED MEMBERS

NIH GUIDE, Volume 22, Number 21, June 11, 1993

RFA:  HD-93-014

P.T. 34, FF

Keywords: 
  Mental Retardation 
  Health Services Delivery 
  Biomedical Research, Multidiscipl 


National Institute of Child Health and Human Development

Letter of Intent Receipt Date:  July 21, 1993
Application Receipt Date:  September 9, 1993

PURPOSE

The Mental Retardation and Developmental Disabilities Branch (MRDD),
Center for Research for Mothers and Children (CRMC), of the National
Institute of Child Health and Human Development (NICHD) invites
research grant applications on ethnic minority families with mentally
retarded or developmentally disabled members.  The primary goal of
this Request for Applications (RFA) is to stimulate research on the
unique qualities of ethnic minority families with mentally retarded
or developmentally disabled members.  The ethnic minority populations
to be studied are:  African-American; Hispanic; Asian-American,
including Pacific-Island-Americans; and American-Indian, including
Alaskan-Natives.  High priority research topics include traditional
beliefs, values, and responses to mental retardation and
developmental disability of these particular ethnic groups, formal
and informal support systems that are most likely to be used by
families in these groups, and the impact of ethnicity on families'
interactions with various types of service agencies.

HEALTHY PEOPLE 2000

The Public Health Service (PHS) is committed to achieving the health
promotion and disease prevention objectives of "Healthy People 2000,"
a PHS-led national activity for setting priority areas.  This RFA,
Ethnic Minority Families with Retarded Members, centers on a high
priority research area, the health and well- being of several special
populations: people with disabilities, and people in ethnic minority
groups, many of whom have low incomes.  Potential applicants may
obtain a copy of "Healthy People 2000" (Full Report:  Stock No.
017-001-00474-0) or "Healthy People 2000" (Summary Report:  Stock No.
017-001-00473-1) through the Superintendent of Documents, Government
Printing Office, Washington, DC 20402-9325 (telephone: 202-783-3238).

ELIGIBILITY REQUIREMENTS

Applications may be submitted by domestic for-profit and non-profit
organizations, public and private, such as universities, colleges,
laboratories, units of state and local governments, and eligible
agencies of the Federal government.  Minority investigators and women
are encouraged to apply.  It is suggested that applicants have
research experience pertinent to the research agenda spelled out in
the RFA.  Foreign institutions are not eligible for First Independent
Research Support and Transition (FIRST) awards (R29).

MECHANISM OF SUPPORT

This RFA will use two funding mechanisms:  the National Institutes of
Health (NIH) individual research grant (R01) or the FIRST Award
(R29).  Responsibility for the planning, direction, and execution of
the proposed project will be solely that of the applicant.  The total
project period for applications submitted in response to the present
RFA may not exceed five years and may be renewed according to the
conventional procedures that pertain to PHS grants.

This RFA is a one-time solicitation.  Future unsolicited competing
continuation applications will compete with all
investigator-initiated applications and be reviewed according to the
customary peer review procedures.

FUNDS AVAILABLE

It is estimated that applications submitted in response to this
announcement will compete for approximately $750,000 in direct costs
that will be made available for the first year of support. It is
expected that four awards will be made.  The number of awards depends
on the overall scientific merit of the applications and the
availability of funds.

RESEARCH OBJECTIVES

With the recent trend to deinstitutionalization, retarded and
developmentally disabled individuals are spending more of their
childhood and adult years living with their families.  The result is
that there are increasing opportunities for reciprocal influences
between retarded persons and other family members.  In 1986 the MRDD
Branch issued an RFA for research on families with retarded members.
Since that time research in this area has grown rapidly.  However,
little attention has been given to ethnicity in research on families
with retarded or developmentally disabled members.  In fact, much of
the research literature in this field fails to describe the ethnicity
of the families studied.  Although it is difficult to establish
reliable statistics on the prevalence of mental retardation and
developmental disability in ethnic minority populations, it is known
that conditions associated with low birth weight, prenatal and
postnatal insult from environmental toxins, lack of economic
resources, deprivation, and inadequate medical care, have contributed
to the incidence of disability, including mild to severe retardation,
in selected groups within ethnic minority populations.  Thus, while
many ethnic minority families care for retarded or developmentally
disabled family members, little is known about these families.  For
this reason the MRDD Branch of NICHD held a conference in Bethesda,
Maryland in April 1992 to review the status of research on ethnic
minority families with retarded and developmentally disabled members
and to identify promising directions, as well as methodological
problems, in this research.

This RFA is intended to encourage researchers to focus on ethnic
minority families with retarded or developmentally disabled members,
to learn more about their unique circumstances and experiences,
beliefs, goals, needs, resources, strengths, and sources of support.
The families to be studied may be from one or more of the following
groups: African-American; Hispanic; Asian-American, including
Pacific-Island-Americans; and American-Indian, including
Alaskan-Natives.  High priority research topics include traditional
beliefs, values, and responses to mental retardation and
developmental disability of these particular ethnic groups, formal
and informal support systems that are most likely to be used by
families in these groups, and the impact of ethnicity on families'
interactions with various types of service agencies.  Research topics
in need of attention include the following:

A.  What are the traditional values and responses to retardation and
developmental disability in particular ethnic minority groups?  What
are common beliefs within groups about the nature and causes of
disabilities, and the functions and value of retarded persons in the
family and society?  How are these beliefs transmitted from
generation to generation?  Within particular ethnic groups, to what
degree are family members' beliefs and responses to disability
affected by variables such as education, socioeconomic status, family
composition, size, and type, for example, single-parent families,
nuclear, or extended families?  In the case of recently immigrated
ethnic minority groups, how are beliefs and responses to retardation
and disability affected by recency of immigration, lifestyle changes,
such as employment, gender roles, and acculturation?

B.  What types of formal and informal support systems are most likely
to be used by family members in different ethnic groups? What are the
characteristics of effective support systems for various family
members, and how do they function?  Do the various family members,
e.g., mothers, fathers, siblings, grandparents, use similar or
different support systems?  What is the impact of economic factors on
access and receptiveness to various types of formal and informal
support systems and forms of services?  How do ethnicity, family
characteristics, and economic resources interact to affect the above
outcomes?

C.  What variables need to be considered in the development of
appropriate models and instruments to assess family functioning and
the needs of individuals in ethnic minority families with retarded or
developmentally disabled members?

All investigations must carefully consider the type and severity of
retardation, and other behavioral characteristics of the retarded and
developmentally delayed members of the families to be studied, as
well as the presence of associated disabling conditions, such as
epilepsy, cerebral palsy, and hyperactivity.  It is not necessary to
compare ethnic minority families with Euro-American families.
Proposals that include families from two or more different ethnic
minority groups are welcome; however, research on a single ethnic
group, is also appropriate.  Although researchers must necessarily
limit the number of variables to be investigated, it is important to
be aware of sources of heterogeneity within the populations to be
studied, including ethnic subgroup, differences in language and
acculturation; socioeconomic status; age, cohort, and/or stage in the
family cycle; family structure and composition; and geographic region
and characteristics of the local community, to cite a few examples.
Research designs may be cross-sectional or longitudinal, and all
stages of the life cycle may be investigated.  Care should be taken
that measures are appropriate for the populations to be studied.
Qualitative, as well as quantitative methods, may be used.

STUDY POPULATIONS

SPECIAL INSTRUCTIONS TO APPLICANTS REGARDING IMPLEMENTATION OF NIH
POLICIES CONCERNING INCLUSION OF WOMEN AND MINORITIES IN CLINICAL
RESEARCH STUDY POPULATIONS

It is NIH policy that applicants for NIH clinical research grants
(i.e., research involving human subjects) will be required to include
minorities and women in study populations so that research findings
can be of benefit to all persons at risk of the disease, disorder or
condition under study.  This RFA is for research on ethnic minority
families in four groups: African-American; Hispanic; Asian-American,
including Pacific-Island-Americans; and American-Indians, including
Alaskan-Natives.  The composition of the proposed study population
must be described in terms of gender, as well as racial or ethnic
group, and gender issues should be addressed in developing a research
design and sample size appropriate for the scientific objectives of
the study.  This information should be included on the grant
application form PHS 398 in Sections 1-4 of the research plan and
summarized in Section 5, (Human Subjects).

All applications for clinical research submitted to NIH are required
to address these policies.  NIH funding components will not award
grants or cooperative agreements that do not comply with these
policies.  Peer reviewers will address specifically whether the
research plan in the application conforms to these policies.  If the
representation of women or girls in a study design is inadequate to
answer the scientific question(s) addressed and the justification for
the selected study population is inadequate, it will be considered a
scientific weakness or deficiency in the study design and will be
reflected in assigning the priority score to the application.

LETTER OF INTENT

Investigators who expect to respond to this RFA may submit a letter
of intent by July 21, 1993.  The letter of intent should include a
descriptive title of the proposed research, the name, address, and
telephone number of the Principal Investigator, the names of any
other key personnel, and the number and title of the RFA in response
to which the application may be submitted.

Although a letter of intent is not required, is not binding, and does
not enter into the review of subsequent applications, the information
that it contains is helpful in evaluating relevance to the topic of
the RFA and in planning for the review of applications.

The letter of intent is to be sent to Dr. Phyllis W. Berman at the
address listed under INQUIRIES.

APPLICATION PROCEDURES

Applications are to be submitted on form PHS 398 (rev. 9/91). This
application form is available in the office of sponsored research at
most academic and research institutions and from the Office of Grants
Inquiries, Division of Research Grants, National Institutes of
Health, Westwood Building, Room 449, Bethesda, MD 20892, telephone
(301) 435-0714.  The receipt deadline for applications prepared in
response to this RFA is September 9, 1993.  Late applications will be
returned to the applicant without review.

The RFA label available in the application form PHS 398 must be
affixed to the bottom of the face page.  Failure to use this label
could result in delayed processing of the application such that it
may not reach the review committee in time for evaluation.  Check
"YES" in item 2a on the face page of the application and type "Ethnic
Minority Families with Mentally Retarded Members, HD-93-014."
Applications for the FIRST Award (R29) must include at least three
sealed letter of reference attached to the face page of the original
application.  FIRST Award (R29) applications submitted without the
required number of reference letters will be considered incomplete
and will be returned without review.

The original and three copies of the application must be sent or
delivered to:

Application Receipt Office
Division of Research Grants
National Institutes of Health
Westwood Building, Room 240
Bethesda, MD  20892**

In addition, two copies of the application must be sent under
separate cover to:

Susan Streufert, Ph.D.
Division of Scientific Review
National Institute of Child Health and Human Development
6100 Executive Boulevard, Room 5E01
Bethesda, MD  20892

REVIEW CONSIDERATIONS

Applications will be reviewed by NICHD staff for completeness and
responsiveness to the RFA.  Applications deemed non-responsive will
be returned to the applicant.  If an application is returned, the
applicant may resubmit the application to the Division of Research
Grants as an unsolicited application during one of the three yearly
review cycles (February 1, June 1, October 1).  If the application
submitted in response to this RFA is substantially similar to a grant
application already submitted to the NIH for review, but not yet
reviewed, the applicant will be asked to withdraw either the pending
application or the new one.  Simultaneous submission of identical
applications will not be allowed, nor will essentially identical
applications be reviewed by different review committees.  Therefore,
an application cannot be submitted in response to this RFA that is
essentially identical to one that has already been reviewed.  This
does not preclude the submission of substantial revisions of
applications already reviewed, but such applications must include an
introduction addressing the previous critique.

Applications may be triaged by and NICHD peer review group on the
basis of relative competitiveness.  The NIH will withdraw from
further competition those applications judged to be non-competitive
for award and notify the applicant Principal Investigator and
institutional official.  Those applications judged to be competitive
will undergo further scientific merit review.  Those applications
that are complete and responsive will be evaluated in accordance with
the criteria stated below for scientific/technical merit by an
appropriate peer review group convened by the NICHD.  The second
level of review will be provided by the National Advisory Child
Health and Human Development Council.

o  Scientific, technical, or medical significance and  originality of
proposed research.

o  Appropriateness and adequacy of the experimental approach and
methodology proposed to carry out the research.

o  Qualifications and research experience of the Principal
Investigator and staff, particularly, but not exclusively, in the
area of the proposed research.

o  Availability of resources necessary to perform the research.

o  Appropriateness of the proposed budget and duration in relation to
the proposed research.

AWARD CRITERIA

The earliest anticipated award date is April 1994.  The following
will be considered in making awards:

o  Quality of the proposed project as determined by peer review.
o  Availability of funds.
o  Program balance among research areas of the RFA.

INQUIRIES

Written and telephone inquiries concerning this RFA are encouraged.
The opportunity to clarify any issues or questions from potential
applicants is welcome.

Direct inquiries regarding programmatic issues and address the letter
of intent to:

Phyllis W. Berman, Ph.D.
Mental Retardation and Developmental Disabilities Branch,
National Institute of Child Health and Human Development
6100 Executive Boulevard, Room 4B09D
Bethesda, MD  20892
Telephone:  (301) 496-1383

Direct inquiries regarding fiscal and administrative matters to:

E. Douglas Shawver
Office of Grants and Contracts
National Institute of Child Health and Human Development
6100 Executive Boulevard, Room 8A17F
Bethesda, MD  20892
Telephone:  (301) 496-1303

AUTHORITY AND REGULATIONS

This program is described in the Catalog of Federal Domestic
Assistance No. 93.865, Research for Mothers and Children.  Awards are
made under authorization of the Public Health Service Act, Title IV,
Part A (Public Law 78-410, as amended by Public Law 99-158, 42 USC
241 and 285) and administered under PHS grants policies and Federal
Regulations 42 CFR 52 and 45 CFR Part 74.  This program is not
subject to the intergovernmental review requirements of Executive
Order 12372 or Health Systems Agency review.

.

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