Waisman Center Research Participation Core (RPC) Registries

1
Waisman Center Research Participation Core (RPC)
Registries

• Leonard Abbeduto, Ph.D., Core Director
• Susan Vial, M.S.W., Core Staff Coordinator
• Waisman Center
• University of Wisconsin-Madison
• abbeduto_at_waisman.wisc.edu

2
Developmental Disabilities Registry

• 1600 enrolled through WC clinics, research
  projects, self-referrals
• Mixed diagnoses
• Ages 1 to 64 years
• Contact information, family information (e.g.,
  siblings), demographics (e.g., ethnicity, parent
  education), diagnosis
• Diagnoses included
• Down syndrome 400 (ages 1-47)
• Autism Spectrum Disorder 250 (ages 3-37)
• MR/DD 200 (4-55)
• Fragile X Syndrome 90 (5-67)

3
FASD Registry/Database

• 32 enrolled through WC FASD Clinic
• All on spectrum
• Ages 2 to 15 years
• Complete clinical records (e.g., physical exam
  findings, speech language, cognitive tests)
  available in most cases

4
Twins Registry

• 4,000 twin pairs enrolled through WI birth
  records
• Ages 1 to 18 years
• Contact information, family information (e.g.,
  siblings), demographics
• For subset zygosity, developmental milestones,
  family functioning (e.g., child rearing
  attitudes), developmental problems/diagnosis

5
Birth Registry

• 35,000 enrolled through published birth
  announcements
• Ages 2 weeks to 23 years
• Primarily used for infant studies

6
K-12 Registry

• 1,000 children (Year 1 only)
• Enrolled in Madison Metropolitan School District
• Ages 5-19 years
• Contact information, family information,
  demographics, special ed services/diagnosis,
  achievement test scores

7
Beyond Enrollment

• Maintain database
• Track participation
• Eliminate duplication
• Track deaths
• Control timing of contacts
• Search on investigator criteria
• Contact registry families of behalf of
  investigators
• Periodic newsletter to registry families
• Parent workshops
• Website for families and researchers
• IRB annual reviews, HIPAA, etc.