[Federal Register: March 5, 2002 (Volume 67, Number 43)]
[Notices]
[Page 10087-10091]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr05mr02-113]
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Part III
Department of Education
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National Institute on Disability and Rehabilitation Research; Notice
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research
AGENCY: Office of Special Education and Rehabilitative Services,
Department of Education.
ACTION: Notice of proposed priorities.
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SUMMARY: The Assistant Secretary for Special Education and
Rehabilitative Services proposes priorities for one or more Burn Model
Systems (BMS) Projects and one Burn Data Center under the Disability
and Rehabilitation Research Projects (DRRP) Program of the National
Institute on Disability and Rehabilitation Research (NIDRR) for fiscal
year (FY) 2002. The Assistant Secretary takes this action to focus
research attention on an identified national need. We intend this
priority to improve the rehabilitation services and outcomes for
individuals with severe burn injuries.
DATES: We must receive your comments on or before April 4, 2002.
ADDRESSES: Address all comments about these proposed priorities to
Donna Nangle, U.S. Department of Education, 400 Maryland Avenue, SW.,
room 3412, Switzer Building, Washington, DC 20202-2645. If you prefer
to send your comments through the Internet, use the following address:
donna.nangle@ed.gov.
You must include the term Burn Data Projects or Burn Data Center in
the subject line of your electronic message.
FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 205-
5880 or via the Internet: donna.nangle@ed.gov.
If you use a telecommunications device for the deaf (TDD), you may
call the TDD number at (202) 205-4475.
Individuals with disabilities may obtain this document in an
alternative format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed under FOR FURTHER
INFORMATION CONTACT.
SUPPLEMENTARY INFORMATION
Invitation to Comment
We invite you to submit comments regarding these proposed
priorities.
We invite you to assist us in complying with the specific
requirements of Executive Order 12866 and its overall requirement of
reducing regulatory burden that might result from these proposed
priorities. Please let us know of any further opportunities we should
take to reduce potential costs or increase potential benefits while
preserving the effective and efficient administration of the program.
During and after the comment period, you may inspect all public
comments about these priorities in room 3412, Switzer Building, 330 C
Street SW., Washington, DC, between the hours of 8:30 a.m. and 4 p.m.,
Eastern time, Monday through Friday of each week except Federal
holidays.
Assistance to Individuals With Disabilities in Reviewing the Rulemaking
Record
On request, we will supply an appropriate aid, such as a reader or
print magnifier, to an individual with a disability who needs
assistance to review the comments or other documents in the public
rulemaking record for these proposed priorities. If you want to
schedule an appointment for this type of aid, please contact the person
listed under FOR FURTHER INFORMATION CONTACT.
General Information
We will announce the final priorities in a notice in the Federal
Register. We will determine the final priorities after considering
responses to this notice and other information available to the
Department. This notice does not preclude us from proposing or funding
additional priorities, subject to meeting applicable rulemaking
requirements.
Note: This notice does not solicit applications. In any year in
which we choose to use these proposed priorities, we invite
applications through a notice published in the Federal Register.
When inviting applications we designate each priority as absolute,
competitive preference, or invitational.
The proposed priorities refer to the New Freedom Initiative (NFI).
The NFI can be accessed on the Internet at: http://www.whitehouse.gov/
news/freedominitiative/freedominitiative.html.
The proposed priorities also refer to NIDRR's Long-Range Plan (the
Plan). The Plan can be accessed on the Internet at: http://www.ed.gov/
offices/OSERS/NIDRR/Products.
Disability and Rehabilitation Research Projects (DRRP) Program
The purpose of the DRRP Program is to plan and conduct research,
demonstration projects, training, and related activities to:
(a) Develop methods, procedures, and rehabilitation technologies
that maximize the full inclusion and integration into society,
employment, independent living, family support, and economic and social
self-sufficiency of individuals with disabilities; and
(b) Improve the effectiveness of services authorized under the Act.
The BMS Projects must conduct research designed to improve
treatment and service delivery outcomes and must demonstrate excellence
in clinical care, rehabilitation research, and relevance to consumers,
principally individuals with burn injuries and their families. Each BMS
project funded under this program will have an integrated continuum of
care to support the rehabilitation of persons with burn injury, with
early linkage to trauma centers as well as community-based treatment
alternatives. There should be an emphasis on multi-disciplinary
treatment and service delivery approaches. Additional information on
the BMS program is available on the Internet at: http://mama.uchsc.edu/
pub/nidrr.
The Department is particularly interested in ensuring appropriate
expenditure of public funds. Not later than three years after the
establishment of any project, NIDRR will conduct one or more reviews of
the activities and achievements of the project to ensure that it is
carrying out proposed activities and contributing to the advancement of
knowledge. In accordance with the provisions of 34 CFR 75.253(a),
continued funding depends at all times on satisfactory performance and
accomplishment of stated objectives.
The NFI emphasizes the importance of access to assistive and
universally designed technologies, employer and workplace supports, and
promoting full access to community-based care. The Plan emphasizes the
need for consumer knowledge and information, new techniques and
technologies, and advancements in the overall body of scientific
knowledge. Focusing on both individual and systemic factors that impact
functional capability, the Plan includes the following elements:
employment outcomes; health and function; technology for access and
function; and independent living and community integration.
NIDRR recently completed summative reviews of its BMS projects.
Participants in the program reviews observed that the comprehensive
continuum of quality care should continue to be a key requirement for
participation in the BMS program. In addition, participants felt that
projects must demonstrate the impact on individual outcomes of
integrating rehabilitation techniques in burn treatment. Reviewers also
noted that uniformly comprehensive, high quality care together with a
common data collection system and administrative infrastructure make
the BMS program a valuable platform for
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various collaborative studies, including multi-center trials of
rehabilitation therapies and technologies.
The BMS program has, since its inception, been guided by a
committee consisting of the individual project directors. The project
representatives will be required to meet annually in Washington, DC,
and with NIDRR input and guidance, develop and oversee the policies of
the BMS. NIDRR intends to work through the project directors to
implement the following recommendations:
Systematic evaluation of the burn longitudinal data set,
with reduction in redundancy of data items and consideration of
adoption of a minimal data set;
Development of guidelines for public use of the data set,
ensuring confidentiality of data;
Continued development of research management mechanisms
that ensure rigorous attention to protocols in collaborative studies;
and
Evaluation of the inclusion criteria's impact on the
population admitted to the model system.
Proposed Priorities--Burn Model System Projects and Burn Data
Coordinating Center
Background
In 1994, NIDRR established the Burn Injury Rehabilitation Model
Systems of Care (Burn Model Systems) by making 36-months awards to
three Centers. In 1997, NIDRR continued the Burn Model Systems (BMS)
program and funded four projects for 60 months. NIDRR funded a separate
Burn Data Coordinating Center in 1998. The BMS projects are committed
to developing and demonstrating comprehensive burn care and
rehabilitation services, involving all necessary and appropriate
disciplines, for children and adults with severe burns, from point of
injury to community integration and long-term follow-up. The BMS
projects also evaluate the efficacy of the BMS program through the
collection and analysis of uniform data on the course of recovery and
outcomes following the delivery of a coordinated system of care that
includes emergency care, acute care management, comprehensive inpatient
rehabilitation, and long-term interdisciplinary follow-up services.
The Burn Data Coordinating Center (BDCC) coordinates the
centralized data collection, manages the database, and provides
statistical support to the BMS projects. The current data elements may
be obtained from: http://mama.uchsc.edu/pub/nidrr.
In the past, the use of data from the BMS database has been largely
restricted to the use of BMS researchers. Recent Federal regulations
(see March 16, 2000; 65 FR 14416-14418) outline conditions under which
outside parties may request access to the data under the auspices of
the Freedom of Information Act. In addition, there is increased
interest in expanding the use of these data in conjunction with
population-based data to further research on burn injury rehabilitation
by the larger research community. Both activities require development
of guidelines that ensure subject confidentiality, protect the identity
of individual projects, and support use of the data in rigorous
research efforts.
The American Burn Association (ABA) reports that about 51,000
Americans, one-third under age 20, are hospitalized for severe burn
treatment every year. Of this number, 5,500 die (ABA National Burn
Repository Report, April 18, 2001; http://www.ameriburn.org/pub/
factsheet.htm). Burn injuries can have devastating impacts on the
ability of an individual to function in the community and to achieve
positive long-term outcomes. Early initiation of an aggressive
inpatient rehabilitation program in a burn program is critical for
restoration of optimal physical and psychological function (De Santi
L., Lincoln L., Egan F., Dempling, R., Development of a burn
rehabilitation unit: Impact on burn center length of stay and
functional outcome, Journal of Burn Care and Rehabilitation, Sept.-Oct.
1998; 19(5): 414-9).
In the past, individuals who didn't die from burn shock during the
first few weeks following the burn incident often died from wound
sepsis in the following weeks. Today, new innovative therapies such as
improved antibiotics for wound management and infection control,
improved nutritional supports, and advanced surgical skin grafting
techniques provide burn survivors greater chances of survival. Acute
burn treatment encompasses a number of elements that will affect the
rehabilitation process. For instance, research has led to improved
biotechnology-based products (i.e., biodegradable bandage or spray-on
dressings) that are redefining potential outcomes of severe burn by
limiting scarring and increasing potential for regaining function (Crab
shells and healing webs: Burn Therapy's Bright Future, http://
healthwatch.medscape.com/cx/viewarticle/216114, Sept. 19, 2001).
Treatment to enhance mobility reduces contractures and improves long-
term functional outcomes. Nutrition also is critical to wound healing
and to regaining strength and ability to participate in ongoing
rehabilitation efforts (Deitch E.A., Nutritional support of the burn
patient, Critical Care Clinics, July 1995, 11(3): 735-50).
The goal of rehabilitation intervention for burn patients is to
maximize function, minimize or prevent secondary complications, and
improve long-term outcomes such as return to community, employment, and
quality of life. Burn trauma often causes injuries and impairments in
addition to the burn, and many individuals with burn injuries have
secondary complications related to the burn condition, such as
disfiguring scars, contractures, chronic open wounds, hypersensitivity
to heat and cold, amputation, heterotopic ossification, chronic pain,
deconditioning/weakness, and neuropathies. Neuropathy is a common
complication of severe burn injury inpatients who are older and
critically ill (Kowalske K., Holavanahalli R., Helm P., Neuropathy
after burn injury, Journal of Burn Care and Rehabilitation, Sept.-Oct.
2001; 22(5): 353-7). Scars may require many surgeries and lifelong
management. Many of these impairments may be mitigated by integrating
rehabilitation techniques and approaches into the acute treatment
setting and continuing with aggressive rehabilitation interventions
once the acute phase of treatment is completed.
A number of rehabilitation techniques are used with burn survivors.
These include psychological treatments to deal with problems of self-
image and depression, physical therapy to facilitate muscle use and
strengthening, occupational therapy to assist with activities of daily
living (e.g., dressing), and assistive devices. Complementary and
alternative therapies (e.g., massage therapy) may be useful tools in
relieving post-burn itching, pain, and psychological symptoms. Wellness
programs such as aerobic exercise can be effective in increasing
muscular strength and functional outcome (Cucuzzo N.A., Ferrando A.,
Herndon D.N., The effects of exercise programming vs. traditional
outpatient therapy in the rehabilitation of severely burned children,
Journal of Burn Care and Rehabilitation, May-June 2001; 22(3): 214-20).
Advancing technology has the potential to enhance access and function
for individuals with burns such as the expanded use of virtual reality
for reducing pain during burn therapy sessions (Hoffman H.G., Patterson
D.R., Carrougher G.J., Sharar S.R., Effectiveness of virtual reality-
based pain control with multiple treatments, Clinical Journal of Pain,
Sept. 2001; 17(3): 229-35). Assistive
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devices such as orthotics or prosthetics may reduce the likelihood of
secondary complications in burn injuries and maximize residual function
for persons who acquired limb loss because of the burn.
Telerehabilitation programs may provide services for people with burn
injuries who live in rural areas (Massman N.J., Dodge J.D., Fortmark
K., Schwartg K.J., Solem L.D., Burns follow-up: An innovative
application of telemedicine, Journal of Telemedicine and Telecare,
1999; 5 Supplement 1:S52-4).
Rehabilitation for burn survivors includes efforts by social
workers and psychologists who work with the individuals to deal with
the psychological aftermath of severe burn and issues such as
sexuality, family emotional status, and long-term behavioral adjustment
of pediatric burn survivors. Strategies such as peer support begun
early in the rehabilitation process may enhance return to participation
in the community. Support groups can provide an opportunity to
communicate with others going through the same unsettling changes.
Rehabilitation goals include community reintegration and burn survivors
face many obstacles in reaching this goal. For instance, a number of
environmental factors, such as alcohol dependency, drug abuse,
psychiatric treatment, heat/cold hypersensitivity or preexisting
physical disability may impact vocational rehabilitation, community and
workplace integration (Fauerbach J.A., Engrav L., Kowalske K., Brych
S., Bryant A., Lawrence J., Li G., Munster A., de Latour B., Barriers
to employment among working-aged patients with major burn injury,
Journal of Burn Care and Rehabilitation, Jan.-Feb. 2001; 22(1): 26-34;
Horn W., Yoels W., Bartolucci A., Factors associated with patient's
participation in rehabilitation services: a comparative injury analysis
12 months post-discharge, Disability and Rehabilitation; May 20, 2000;
22(8): 358-62).
Priorities
Priority 1--Burn Model System Projects
The Assistant Secretary proposes to fund an absolute priority for
one or more Burn Model System projects for the purpose of generating
new knowledge through research to improve treatment and service
delivery outcomes for persons with burn injury. A BMS project must:
(1) Establish a multidisciplinary system that begins with acute
care and encompasses rehabilitation services specifically designed to
meet the needs of individuals with burn injuries. This system must
encompass a continuum of care, including emergency medical services;
acute care services; acute medical rehabilitation services; post-acute
services; psychosocial/vocational services; and long-term community
follow-up.
(2) Participate as directed by the Assistant Secretary in national
studies of burn injuries by contributing to a national database and by
other means as required by the Assistant Secretary; and
(3) Conduct significant and substantial research in burn injury
rehabilitation, ensuring that each project has sufficient sample size
and methodological rigor to generate robust findings that will
contribute to the advancement of knowledge in accordance with the NFI
and the Plan. Applicants may develop up to three site-specific projects
and develop up to two projects to be done in collaboration with other
BMS projects.
In proposing research studies, applicants must demonstrate their
potential impact on rehabilitation goals and objectives. Applicants may
select from the following research directives related to specific areas
of the NFI and the Plan:
Integrating Persons with Disabilities into the Workforce:
(1) Assess intervention strategies for improving employment outcomes of
persons surviving severe burns; (2) Identify environmental factors that
either enable or impede community and workplace integration.
Maintaining Health and Function: (1) Study interventions
to improve rehabilitation potential in the acute care setting such as
nutritional support, early therapeutic exercise to increase mobility,
treatment for scar tissue, or the prevention and treatment of secondary
conditions; (2) Develop and evaluate rehabilitation treatment/
interventions for persons surviving severe burns; or (3) Design and
test service delivery models that provide quality rehabilitation care
for burn survivors under constraints imposed by recent changes in the
health care financing system.
Assistive and Universally Designed Technologies: (1)
Evaluate the impact of selected innovations in technology (e.g.,
assistive devices, biomaterials) on outcomes such as function,
independence, and employment of individuals with burn injuries; or (2)
Investigate the impact of national telecommunications and information
policy on the access of persons with burn injuries to related
education, work, and other opportunities.
Full Access to Community Life: Assess the value of peer
support and early onset of services from community and social support
organizations to improve outcomes such as independence, community
integration, employment, function, and health maintenance.
Associated Areas: Develop and refine measures of treatment
effectiveness in burn rehabilitation to incorporate environmental
factors in the assessment of function.
(4) Provide widespread consumer-oriented dissemination activities
to other burn projects, rehabilitation practitioners, researchers,
individuals with burn injuries and their families and representatives,
and other public and private organizations involved in burn care and
rehabilitation.
In carrying out these purposes, the projects must:
Involve consumers, as appropriate, in all stages of the
research and demonstration endeavor;
Demonstrate culturally appropriate and sensitive methods
of data collection, measurements, and dissemination addressing needs of
burn survivors with diverse backgrounds;
Demonstrate the research and clinical capacity to
participate in collaborative projects, clinical trials, or technology
transfer with other BMS projects, other NIDRR grantees, and similar
programs of other public and private agencies and institutions; and
In conjunction with other BMS projects, plan and conduct a
State-of-the-Science conference on ``New Trends in Burn Injury
Rehabilitation'' and publish a comprehensive report on the final
outcomes of the conference. The report must be published by the end of
the fourth year of grant.
Proposed Priority 2--Burn Data Coordinating Center
The Assistant Secretary proposes to fund an absolute priority for a
Burn Data Coordinating Center for the purpose of managing and
facilitating the use of information collected by the BMS projects on
individuals with burn injury. The BDCC must:
(1) Establish and maintain a database repository for data from BMS
projects while providing for confidentiality, quality control, and data
retrieval capabilities, using cost-effective and user-friendly
technology;
(2) Ensure data quality, reliability, and integrity by providing
training and technical assistance to BMS projects on data collection
procedures, data entry methods, and use of study instruments;
(3) Provide consultation to NIDRR and to directors and staff of the
BMS
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projects on utility and quality of data elements;
(4) Support efforts to improve the research findings of the BMS
projects by providing statistical and other consultation regarding the
national database;
(5) Facilitate dissemination of information generated by the BMS
projects, including statistical information, scientific papers, and
consumer materials;
(6) Evaluate the feasibility of linking and comparing BMS data to
population-based data sets or other available burn data and provide
technical assistance for such linkage, as appropriate; and
(7) Develop guidelines to provide access to BMS data by individuals
and institutions, ensuring that data are available in accessible
formats for persons with disabilities.
In carrying out these purposes, the center must:
Demonstrate knowledge of culturally appropriate methods of
data collection, including understanding of culturally sensitive
measurement approaches; and
Collaborate with other NIDRR-funded projects, e.g., the
Model Spinal Cord Injury and Traumatic Brain Injury Model System Data
Centers, regarding issues such as database development and maintenance,
center operations, and data management.
Applicable Program Regulations: 34 CFR part 350.
Electronic Access to This Document
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(Catalog of Federal Domestic Assistance Number 84.133A, Disability
Rehabilitation Research Project)
Program Authority: 29 U.S.C. 762(g) and 764(b).
Dated: February 27, 2002.
Lorretta L. Petty,
Acting Assistant Secretary for Special Education and Rehabilitative
Services.
[FR Doc. 02-5229 Filed 3-4-02; 8:45 am]
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