Preventing Secondary
Conditions Associated with
Spina Bifida or Cerebral Palsy Symposium
February 17-19, 1994, Crystal City, Virginia
Recommendations
for Researchers
THE PRIMARY goals of the conference were to identify preventable secondary
conditions and to identify interventions that might reduce their incidence.
These tasks were often difficult because of the many important questions that
have not yet been adequately studied. Conference participants, in their
discussions in the separate working groups, identified gaps in our knowledge and
from these assembled a list of high-priority research needs. In several of the
other working group reports, research needs are specially addressed (see the
preceding reports), and these recommendations are summarized below. Although the
research recommendations were generated with specific reference to spina bifida
or cerebral palsy, they appear to be relevant to secondary conditions of many,
if not all, primary disabling conditions.
The following
groups of issues for research, information dissemination, and advocacy were
identified. These recommendations are provided for consideration by federal
agencies involved in disability research.
RESEARCH
1. Study the natural history of secondary conditions and the effectiveness of
interventions designed to reduce their incidence.\
a. Study the levels at which function-or loss of function-is measured
b. Study types of interventions
c. Employ various research approaches
INFORMATION DISSEMINATION
2. Develop and evaluate systems for transferring state-of-the-art information
about the prevention of secondary conditions.
a. Develop systems for relevant target users, including:
b. Identify
variables that determine impact of information on persons with disabilities
(including coping styles and expectations).
ADVOCACY
3. Promote the prevention of secondary conditions by incorporating prevention in
major administration initiatives, including those in:
The Working Group on Research, led by Mike Adams and Danuta Krotoski, included
Betty Jo Berland, Scott Campbell Brown, CeCelia Collier, Gregory W. Heath, Joe
Hollowell, Laura James, and Judy Small.