Manual of Procedures

Each in-person visit (and corresponding annual follow-up) consists of a standardized protocol and centralized training. The Manual of Procedures is the written standardized protocol. The certification for the centralized training is located in the quality control chapter of the manual of procedures. Each chapter of the manual of procedures is organized by a phenotypic domain, and most chapters which describe data collection also have a data collection form. These are documented by phenotypic domain and include all visits below.

Introduction, Interviewing Guidelines, Appointment Letters, Documents, and Alerts

 

Visit 1

Visit 2

Visit 3

Introduction

 Ch1_Introduction Visit 2: Introduction

 

Visit 3:_Introduction

Interviewing and Proxy Interviewing Guidelines

Visit 1: Interviewing Guidelines

Visit 1: Proxy Interviewing Guidelines

 Visit 2: Interviewing Guidelines

 

Visit 3: Interview Guidelines

Appointment Letters, Documents, and Alerts

Visit 1: Appointment Letters and Documents

Visit 1: Alerts

Visit 2: Appointment Documents

LengthTracking_12152014_v5

Visit 2: Alerts

Panel 21 Alert Tracking

 

Visit 3: Appointment Documents

Visit 3: LengthTracking

Visit 3: Alerts

Visit 3: Panel 21_AlertTracking
Recruitment (including Controls)

Visit 1

Visit 2

Visit 3

Manual of Procedures

Visit 1: Recruitment

Visit 1: Control Recruitment

 Visit 2: Recruitment Visit 3: Recruitment

Accompanying Data Collection Forms

01_TS1_TlphnFLoSS1_012508_v6

02_TS2_RelCntctTrackInfo_101006

03_TS1a_TelephoneFamily_032207_v3

04_TS3_PedInfoForm_060206

05_TS1ac_TelephoneControl_032607_v4

06_TS1c_FLSControl_060706

06a_TS1c_FLSControl_062706_PilotUPBU

07_LLFS Response Form_010808_v3

Panel 14_PrtcpContactInfo_021606

05_TS1ac_TelephoneControl_06172014_v1

03_TS1a_TelephoneFamily_06172014_v1

Panel 12 Wrksht_FamilyStrct_030706_v1

Panel 14_PrtcpContactInfo_03122015_v4

Visit 3: 02_TS2-V3_RelCntctTrackInfo_161019_v5

03_TS1a-V3_TelephoneScreener_21022020_v2

05_TS1ac_TelephoneControl_21112019_v4

Panel 14_PrtcpContactInfo_21102019_v1

Obtaining Consent

 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Obtaining Consent Vsit 2: Obtaining Consent Visit 3: Obtaining Consent

Accompanying Data Collection Forms

Panel 1_ConsntTrckFsbilty_031307_v2

Panel 1_ConsntTrckFsbilty_BU_031307_v2

Panel 1_ConsntTrckFsbilty_CU_031307_v2

Panel 1_ConsntTrckFsbilty_UP_032207_v3

Panel 1a_CnsntAssmt_032907_v1

Panel 1b_ProxyCriteria_032907_v1

Panel 1_ConsntTrckFsbilty_BU_01132015_v3

Panel 1_ConsntTrckFsbilty_CU_11212016_v4

Panel 1_ConsntTrckFsbilty_DK_01132015_v2

Panel 1_ConsntTrckFsbilty_UP_01132015_v2

Panel 1a_CnsntAssmt_06032014_v1

Panel 1b_ProxyCriteria_06032014_v1

Visit 3: Panel 1_ConsntTrckFsbilty_all_20012021_v3

Visit 3: Panel 1a_CnsntAssmt_23102019_v1

Visit 3: Panel 1b_ProxyCriteria_23102019_v1

 

Anthropometry: Blood Pressure, Height, Weight, Ankle Brachial Index

 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Antropometric Measures Visit 2: Anthropometric Measures Visit 3: Anthropometric Measures

Accompanying Data Collection Forms

 Panel 9_BP-Weight_092607_v6 Panel 9_NP_BPWGHT_08012015_v3 Visit 3: Panel 9_ALL_BPWGHT_13102019_v1

 

Carotid Ultrasound

 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 

N/A

 Visit 2: Carotid Ultrasound Visit 3: Carotid Ultrasound

Accompanying Data Collection Forms

 N/A

LLFS alert_action_form_2014_11_18

Panel 18 CarotidUltrasound_log_sheet_06022014_v3

Panel18a_LLFS_CQI Form_07072014

Panel18b_LLFS_8_image_carotid IMT wksht_07072014

Visit 3: Carotid alert action form

Visit 3: Carotid CQI form

Visit 3: Carotid 8 image IMT Worksheet

Visit 3: Carotid Log Sheet
Socio-demographic Information

 

Visit 1

Visit 2

Visit 3 

Manual of Procedures

 Visit 1: Socio-Demographic Information Visit 2: Socio-Demographic Information Visit 3: SocioDemographic Information

Accompanying Data Collection Forms

Panel 2_SocioDemo_010808_v7

Panel 2_SocioDemo_DK_040207_v5

Panel 2_New_SocioDemo_03132015_v14

Panel 2_New_SocioDemo_DK_03132015_v13

Panel 2_Returning_SocioDemo_03132015_v14

Panel 2_Returning_SocioDemo_DK_03132015_v14

Panel 2a_ProbandGrandchild_03132015_v4

VIsit 3: US Panel 2_All_SocioDemo_12112020_v5

Visit 3: Denmark Panel 2_All_SocioDemo_DK_12112020_v4

 

Physical Function/ Activities of Daily Living

 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Physical Function Visit 2: Physical Function Visit 3: Physical Function

Accompanying Data Collection Forms

 Panel 3_ADLs_050407_v4

Panel 3_New_PhysFunctADLs_03132015_v9

Panel 3_Returning_PhysFunctADLs_03122015_v10

Panel 20 IADL_03132015_v2

Visit 3: Panel 3_ALL_PhysFunctADLs_13102019_v2

Visit 3: Panel 20 IADL_13102019_v1
Cognitive Assessment and Brain Donation

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Cognitive Assessment

Visit 2: Cognitive Assessessment

Visit 2: Clinical Dementia Rating

Visit 3: Cognitive Assessment

Visit 3: Dementia Review

Visit 3: Brain Donation

Accompanying Data Collection Forms (Unable to share due to copyright, but tests given are listed)

 Panel 7c_Prxy-Bsd Onset Intvw_081607_v2

 

CDR_Panel_12

Visit 3: Panel 12 CDR

Visit 3: cover letter for brain donation_03102022

Visit 3: Brain Donation FAQ

Visit 3: Brain donation LLFS form

 

Mood and Personality
 

Visit 1

Visit 2

Visit 3 

Manual of Procedures

 Visit 1: Mood and Personality See New Participant Chapter (not repeated for participants from Visit 1) Visit 3: Mood and Personality

Accompanying Data Collection Forms

 Panel 11_Mood-Personality_040207_v4

Panel 11_CES-D_09162014_v3

Panel 11a-II_NP_NEO_03132015_v7

Panel 11_CES-D_22112019_v1

Panel 11a_NP_NEO_22112019_v2
Medical and Personal History
 

Visit 1

Visit 2

Visit 3 

Manual of Procedures

 Visit 1: Medical and Personal History Visit 2: Medical and Personal History Visit 3: Medical and Personal History

Accompanying Data Collection Forms

Panel 4_Personal Hx_040207_v3

Panel 5_MedHx_032708_v4

Panel 4_New_PersonalHx_03132015_v7

Panel 4_Returning_PersonalHx_03132015_v8

Panel 5_New_MedHx_03132015_v12

Panel 5_Returning_MedHx_03132015_v12

Panel 4_ALL_PersonalHx_07042021_v4

Panel 5_NewPpt_MedHx_07012021_v3

Panel 5_ReturnPpt_MedHx_17112021_v4

 

Census Linkage and Pedigree Creation
 

Visit 1

Visit 2

Visit 3

Manual of Procedures

Visit 1: Census Linkage

Visit 1: Pedigree

Accompanying Data Collection Forms

04_TS3_PedInfoForm_060206

Panel 12 Wrksht_FamilyStrct_030706

 Panel 12 Wrksht_FamilyStrct_030706_v1
Physical Performance Measures
 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Performance Measures Visit 2: Performance Measures Visit 3: Performance Measures

Accompanying Data Collection Forms

 Panel 8_Perf Measures_081607_v3 Panel 8_Perf Measures 02052014_v2 Panel 8_Perf Measures 28032023_v8

 

Spirometry
 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Spirometry Visit 2: Spirometry Did not perform due to COVID-19

Accompanying Data Collection Forms

 Panel 10_Spirometry_092407_v5 Panel 10_Spirometry_041314_v3
Medication Inventory
 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Medication Inventory Visit 2: Medication Inventory Visit 3: Medication Inventory

Accompanying Data Collection Forms

 Panel 6_Med Inventory_072707_v4 Panel 6_Med Inventory_03132015_v2 Panel 6_Med Inventory_06102019_v1

 

Blood Collection

 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 Visit 1: Blood Collection

Visit 2: Blood Collection

Visit 2: LLFS collection instructions

 Bisit 3: Blood Collection

Accompanying Data Collection Forms

 Panel 13_Blood Collection_081607_v5

Panel 13_Blood Collection_17062015_v6

Panel 13a_Blood Collection Phantom_03022015_v3

Panel 13_Blood Collection_04092019_v4

Panel 13a_BloodCollectionPhantom_04092019_v2

Panel13b_COVIDsaliva_Brochure_2Panel_LLFS ab saliva
New Participants
 

Visit 1

Visit 2

Visit 3

Manual of Procedures

 N/A Visit 2: New Participants See individual chapters

Accompanying Data Collection Forms

Panel 11_CES-D_09162014_v3

Panel 11a-II_NP_NEO_03132015_v7

Panel 12 Wrksht_FamilyStrct_030706_v1

Panel 14_PrtcpContactInfo_03122015_v4

Panel 19-II_NP_HealthHabits_092211_v6

Panel 11_CES-D_22112019_v1

Panel 11a_NP_NEO_22112019_v2

Panel 14_PrtcpContactInfo_21102019_v1

Panel 19_NP_HealthHabits_30102019_v1

 

Data Entry and Quality Control

Visit 1

Visit 2

Visit 3

Data Entry Manual of Procedures

 Visit 1: Data Entry Visit 2: Data Entry Visit 3: Data Management

Quality Control Manual of Procedures

 Visit 1: Quality Control Visit 2: Quality Control Visit 3: Quality Control
Long Distance Visit and Transfer Protocol
 

Visit 1

Visit 2

Visit 3

Long Distance Visit Manual of Procedures

 Visit 1: Long Distant Visits Visit 2: Long Distant Visits Visit 3: Long Distant Visits

Transfer Protocol Manual of Procedures

 Visit 1: Transfer Protocol

 

Participant Annual Follow-Up
 

Visit 1

Visit 2

Visit 3

Manual of Procedures

Visit 1: Participant FU

Ch25b_PhII FollowUp 102009_v5

Ch25c_PhII FollowUp 092211_v2

Visit 2: Participant Follow-up

Visit 2: Ch25b_PhII FollowUp

 Visit 3: Annual Follow Up

Accompanying Data Collection Forms

Panel 16_FU Qstnaire_021108_v11

Panel 16_FU Qstnaire_DK_011008_v10a

Phase II

Panel 5-II_MedHx_052109_v3

Panel 6-II_Med Inventory_051209_v2

Panel 7b-II_TICS_072009_v7

Panel 7d-II_Dementia_012610_v20

Panel 11a-II_NEO_110609_v5

Panel 14-II_PrtcpContactInfo_061109_v1

Panel 16a-II_FU Qstnaire_DK_050709_v1

Panel 16-II_FU Qstnaire_061109_v4

Panel 18-II_Decedent Intrv_012710_v9

Panel 19-II_HealthHabits_092211_v5F

Panel 16_FU Qstnaire_07062018_v12

Panel 5-II_NP_MedHx03132015_v6

Panel 7b-II_TICS_08262014_v9

Panel 7d-II_Dementia_02282014_v23

CDR_Panel_12

Panel 14_PrtcpContactInfo_03122015_v4

Panel 18-II_Decedent Intrv_07Sep2016_v14

Panel 16-FU_FU Qstnaire_02112021_v9

Panel 5-FU_MedHx_22112019_v1

Panel 7b_TICS_22112019_v1

Panel 7d_Dementia_22112019_v2

Visit 3: Panel 12 CDR

Panel 14_PrtcpContactInfo_21102019_v1

Panel 18-FU_Decedent Intrv_22112019_v2
Presentations and Publications/ Ancillary Studies
 

Visit 1

Visit 2

Visit 3

P&P Policy Manual of Procedures

 Visit 1: P&P Policy Visit 2: P&P Policy Ch21-P&P_04082018_v6

Ancillary Studies Manual of Procedures

 Visit 1: Ancillary Study Policy Visit 2: Ancillary Study Visit 3: Ancillary Studies

 

 

Morbidity and Mortality Committee / Dementia Review Committee
 

Visit 1

Visit 2

Visit 3

Morbidity and Mortality Manual of Procedures

 N/A

Visit 2: M&M Procedures

LLFS_V2_M&M_pilot

 Visit 3: M&M

Dementia Review Manual of Procedures

 N/A Visit 2: Dementia Review Visit 3: Dementia Review

 

Appendices

Visit 1

Visit 2

Visit 3

Appendices

 Visit 1: Appendices

Visit 2: Appendix1a_self administration instructions

Visit 2: Appendix B

Appendices 13122019_v2

Visit 3: Appendicies_Self Admin

Visit 3: Participant Alert Letters

Visit 3: Participant Blood Collection Correspondence

Visit 3:Participant Letters

Visit 3: Participant Visit Report

Visit 3: Results Letters and Medical Records Authorization

LLFS participant satisfaction