Final Research Report

View this project's final research report.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Reviewers’ comments and the investigator’s responses included the following:

  • The reviewers stated that the report was well written and that it honestly reported disappointing results related to the testing of the decision aid the investigator developed. The reviewers asked for additional details on the study methods, which the investigator provided.
  • The reviewers expressed concern that the sampling strategy the investigator used for participants in the qualitative, developmental portion of the project seemed biased. The reviewers had concerns about bias because the investigator recruited individuals from patient advocacy organizations, which are often non-representative of the patient population. The investigator explained that the researchers used two recruitment strategies: seeking participants among parents whom partnering advocacy groups recommended and seeking participants among parents that any of three participating clinics identified through consecutive cases. The investigator stated that recruiting parents these two ways made the sample more representative of the patient population than recruiting only from patient advocacy organizations. 

Conflict of Interest Disclosures

Project Information

David E. Sandberg, PhD
University of Michigan at Ann Arbor
Decision Support for Parents Receiving Genetic Information about Child's Rare Disease

Key Dates

December 2012
December 2017

Study Registration Information


Has Results
Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022