SPINA BIFIDA ASSOCIATION OF AMERICA

RESEARCH AND CLINICAL CARETHE SPINA BIFIDA ASSOCIATION (SBA) LEADS NATIONAL EFFORTS TO IMPROVE HEALTHCARE AND QUALITY OF LIFE FOR INDIVIDUALS WITH SPINA BIFIDA THROUGH RESEARCH, ADVOCACY, AND CLINICAL SUPPORT. WITH SUPPORT FROM THE CDC, SBA COORDINATES THE SPINA BIFIDA COLLABORATIVE CARE NETWORK (SBCCN) TO CONNECT CLINICS, RESEARCHERS, AND FAMILIES WITH BEST PRACTICES. SBA DEVELOPED AND MAINTAINS THE GUIDELINES FOR THE CARE OF PEOPLE WITH SPINA BIFIDA, A COMPREHENSIVE, EVIDENCE-BASED FRAMEWORK FOR MULTIDISCIPLINARY CARE. SBA ALSO COLLABORATES WITH THE NATIONAL SPINA BIFIDA PATIENT REGISTRY (NSBPR), CONTRIBUTING TO CLINICAL RESEARCH AND DATA-DRIVEN QUALITY IMPROVEMENT ACROSS 20 CLINICS AND NEARLY 12,000 PATIENTS.IN RESPONSE TO CRITICAL HEALTH NEEDS, SBA CO-DEVELOPED THE UMPIRE PROTOCOL FOR EARLY KIDNEY PROTECTION AND THE LIFESPAN BOWEL MANAGEMENT PROTOCOL TO GUIDE LIFELONG BOWEL CARE. SBA'S RESEARCH AGENDA, SHAPED BY OVER 1,600 COMMUNITY MEMBERS, TARGETS SIX KEY AREAS INCLUDING INCONTINENCE, MENTAL HEALTH, AND SELF-MANAGEMENT. ONGOING ADVOCACY INITIATIVES ADDRESS ACCESS TO ESSENTIAL MEDICAL SUPPLIES AND SERVICES, INCLUDING CATHETERS AND TRANS ANAL IRRIGATION. SBA ALSO IS THE LYNCHPIN FOR RESEARCH EFFORTS IN THE CLINICAL COMMUNITY. SBA SUPPORTS RESEARCH RECRUITMENT, IDENTIFIES EVIDENCE GAPS, AND ADVOCATES FOR ACCESS TO CRITICAL MEDICAL SUPPLIES AND SERVICES.SBA ALSO LEADS THE ANNUAL CLINICAL CARE MEETING AND IS ADVANCING ADULT CARE BY BUILDING PROVIDER NETWORKS AND SPECIALTY-SPECIFIC TRAINING MODELS TO ENSURE CONTINUITY OF CARE INTO ADULTHOOD.

EDUCATIONSBA DELIVERS VITAL EDUCATION AND SUPPORT THROUGH ITS NATIONAL RESOURCE CENTER, EXPERT-LED WEBINARS, AND PEER-TO-PEER PROGRAMS. SBA'S ONLINE EDUCATION SERIES AND "ASK THE EXPERT" SESSIONS OFFER ACCESSIBLE, EVIDENCE-BASED GUIDANCE FOR INDIVIDUALS AND FAMILIES. THE NATIONAL RESOURCE CENTER PROVIDES CONFIDENTIAL REFERRALS AND A COMPREHENSIVE LIBRARY OF SPINA BIFIDA-SPECIFIC MATERIALS, INCLUDING TOOLS FOR PARENTING AND TRANSITION PLANNING. SBA'S WEBSITE AND E-COMMUNITIES CONNECT THOUSANDS WITH TRUSTED INFORMATION AND PEER SUPPORT. THE ANNUAL SPINA BIFIDA AWARENESS MONTH CAMPAIGN REACHES NEARLY ONE MILLION PEOPLE. SBA ALSO SUPPORTS EXPECTANT PARENTS AND HEALTHCARE PROVIDERS THROUGH MENTORING AND PROFESSIONAL LISTSERVS, BUILDING KNOWLEDGE AND COMMUNITY ACROSS THE LIFESPAN.