LOAD Family Processing:NCRAD Referrals

• Individuals interested in the Genetics Initiative contact NCRAD at 800.526.2839 or alzstudy@iupui.edu

• NCRAD coordinators screen calls and refer and enroll families meeting NCRAD or LOAD criteria

LOAD Family Processing Overview

Family calls NCRAD: meets LOAD criteria

NCRAD coordinators determine location of family members

If at least 1 affected orunaffected near an approved Center

If family localized to area not near an approved Center

If family membersgeographically dispersed

NCRAD notifies appropriate Center

Columbia may enroll as a “travel family”

NCRAD enrollsfamily and collectsinfo through mail

Guidelines for referring NCRAD caller to ADC

• Center must have IRB approval for Genetics Initiative

• At least 1 affected or unaffected > 60 years of age lives within 1 hour of Center

or• Center willing to travel or routinely travels

to location of affected family members

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 Demented1. In-person evaluation2. Telephone interview: functional status, medical history, brief

cognitive testing (or documented MMSE)

Review of diagnostic guidelines (2)What we are striving for…

1. Proband: affected individual evaluated in-person by Center or genetics staff associated with Center

2. Affected sibling: evaluated in-person or diagnosis by medical records/informant telephone interview

3. 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

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

Since the press release and media stories in July

of 2003, NCRAD has received over 1,000 calls/emailsLOAD Family Distribution (Referred by NCRAD)

0

5

10

15

20

25

30

35

78 TOTAL LOAD FAMILIES REFERRED as of 10/14/03

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

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

LOAD Families:NCRAD and Columbia travel families as of July 2003

ADCs with funding/IRB approval

22

2

2

Columbia travel people NCRAD people

Upstate NY:Columbia Travel Family

How do we decrease the number of NCRAD and Columbia travel families?

Encourage Centers to travel!

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

Collaboration between Centers and the travel list!

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

Who goes on the Travel List?

1. Incomplete evaluation: can’t assign diagnosis

2. Early stages of AD

3. Questionable diagnosis including exceptionally old (> 85)

- Individuals in nursing home not a priority