LOAD Family Processing: NCRAD Referrals

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LOAD Family ProcessingNCRAD Referrals

• Individuals interested in the Genetics Initiative
  contact NCRAD at 800.526.2839 or
  alzstudy_at_iupui.edu
• NCRAD coordinators screen calls and refer and
  enroll families meeting NCRAD or LOAD criteria

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LOAD Family Processing Overview
Family calls NCRAD meets LOAD criteria
NCRAD coordinators determine location of family
members
If at least 1 affected or unaffected near an
approved Center
If family localized to area not near an
approved Center
If family members geographically dispersed
NCRAD enrolls family and collects info through
mail
NCRAD notifies appropriate Center
Columbia may enroll as a travel family
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Guidelines for referring NCRAD caller to ADC

• Center must have IRB approval for Genetics
  Initiative
• At least 1 affected or unaffected gt 60 years of
  age lives within 1 hour of Center
• or
• Center willing to travel or routinely travels to
  location of affected family members

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Review of diagnostic guidelines (1)

• Diagnosis of Probable/Possible AD
• In-person evaluation
• Review of medical records from a formal dementia
  evaluation ( informant interview)
• Review of general medical records with informant
  interview
• Diagnosis of Not Demented
• In-person evaluation
• Telephone interview functional status, medical
  history, brief cognitive testing (or documented
  MMSE)

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Review of diagnostic guidelines (2)

• What we are striving for
• Proband affected individual evaluated in-person
  by Center or genetics staff associated with
  Center
• Affected sibling evaluated in-person or
  diagnosis by medical records/informant telephone
  interview
• Third family member evaluated in-person or
  diagnosis by medical records/informant telephone
  interview (affected) or telephone interview with
  brief cognitive testing (unaffected)
• TO MEET THESE GUIDELINES, CENTERS MAY HAVE TO
  TRAVEL

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Since the press release and media stories in July
of 2003, NCRAD has received over 1,000
calls/emails
Site Families
NCRAD 30
Columbia 14
Mayo R 4
Mayo J 4
Wash U 7
Duke 4
Northwest 3
Pitt 3
OHSU 1
MGH 2
BU 2
IU 2
U Wash 1
Kentucky 1
78 TOTAL LOAD FAMILIES REFERRED as of 10/14/03
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NCRAD LOAD families

• NCRAD takes in LOAD families that are
  geographically dispersed
• Informed consent, family history questionnaires,
  medical records, and blood kits through the mail
• Telephone screening implemented TICS
• Some individuals added to a travel list

30 families enrolled by NCRAD
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Travel families

• Columbia can send a research team to see families
  that do not live near a Center with IRB approval
  (families that call NCRAD)
• Most interested in families that are localized,
  but many are dispersed
• 12 total families with 26 affected individuals
  need help from Centers

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LOAD FamiliesNCRAD and Columbia travel families
as of July 2003
ADCs with funding/IRB approval
Columbia travel people
NCRAD people
2
2
2
2
10
Upstate NYColumbia Travel Family
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How do we decrease the number of NCRAD and
Columbia travel families?

• Encourage Centers to travel!

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How do we maintain high quality phenotyping with
geographically dispersed families?

• Collaboration between Centers and the travel list!

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The Travel List

• Will be maintained at Columbia
• NCRAD will notify Columbia of individuals in
  their families that require travel
• We would like approved Centers to add high
  priority individuals to the travel list
• Work out details at the coordinators meeting

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Who goes on the Travel List?

• Incomplete evaluation cant assign diagnosis
• Early stages of AD
• Questionable diagnosis including exceptionally
  old (gt 85)
• Individuals in nursing home not a priority