[Federal Register: March 5, 2002 (Volume 67, Number 43)]
[Page 10087-10091]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]

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Part III

Department of Education


National Institute on Disability and Rehabilitation Research; Notice

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National Institute on Disability and Rehabilitation Research

AGENCY: Office of Special Education and Rehabilitative Services, 
Department of Education.

ACTION: Notice of proposed priorities.


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: 
    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 


Invitation to Comment

    We invite you to submit comments regarding these proposed 
    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 

Assistance to Individuals With Disabilities in Reviewing the Rulemaking 

    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 

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 

    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/
    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/

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/
    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; 
     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

    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).


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 
    (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 
    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 
    (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 

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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.

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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 
[FR Doc. 02-5229 Filed 3-4-02; 8:45 am]