LOAD Family Processing: NCRAD Referrals

1. 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

2. 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”

3. 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

4. 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)

5. 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

6. Since the press release and media stories in July of 2003, NCRAD has received over 1,000 calls/emails 78 TOTAL LOAD FAMILIES REFERREDas of 10/14/03

7. 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

8. 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

9. LOAD Families:NCRAD and Columbia travel families as of July 2003 ADCs with funding/IRB approval Columbia travel people NCRAD people 2 2 2 2

10. Upstate NY:Columbia Travel Family

11. How do we decrease the number of NCRAD and Columbia travel families? Encourage Centers to travel!

12. How do we maintain high quality phenotyping with geographically dispersed families? Collaboration between Centers and the travel list!

13. 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

14. Who goes on the Travel List? • Incomplete evaluation: can’t assign diagnosis • Early stages of AD • Questionable diagnosis including exceptionally old (> 85) • Individuals in nursing home not a priority