1. PhenX Working Group Guidance
April 3rd, 2014

2. Criteria for Selecting Measures
The measures should be:
Clearly defined
Well established
Broadly applicable and generally accepted
Low burden to participants and investigators
Broadly validated and demonstrated utility
Reproducible
Specific
Reliable
Standard measurement protocols exist
Additional criteria include:
Crosscutting relevance for population groups
Relevance to mental health research
Use in major reference study (e.g., NHANES)
Open-source software and nonproprietary instruments preferred
Brevity
Expectation of acceptance by the research community
Set down by PhenX Steering Committee

3. Considerations for Deliberating Measures
Existing, well-established, and freely available
Requirements on both study participants and investigators (i.e., burden)
Acceptance for the foreseeable future
Primary focus on domestic research with consideration for international standards
Number of protocols for the same measure (i.e., age-specific or gender-specific protocols)
Multiple protocols should be comparable
Comparability of equipment models/types
Multi-part questionnaires or repeated measures acceptable as a single measure

4. Consensus Decision-making
WG member presentations at the in-person meeting
WG members prioritize 12 measures to go to outreach
Seek guidance from the SC/MHRP Liaisons

5. Special Requirements and Burden
Requirement Category
Required (Yes/No)
Major equipment
Specialized training
Specialized requirements for biospecimen collection
Average time of greater than 15 minutes in an unaffected individual
Yes in any category means measure is high burden

6. Communications/Reporting
Work with WG manager
In-person meeting
Conference calls before & after outreach period
PhenX portal

7. Outreach Preparation
Outreach helps the WG refine measures for the Toolkit and build consensus
Purpose is to obtain opinions regarding prioritizing the measures.
Includes:
Definition & purpose of the measure
Measure protocol