Nomination of case examples for the first revision of “Registries for Evaluating Patient Outcomes: A User’s Guide”

Nomination of case examples for the first revision of “Registries for Evaluating Patient Outcomes: A User’s Guide”

Background
“Registries for Evaluating Patient Outcomes: A User’s Guide” was published in 2007 by AHRQ as a reference handbook for patient registries focused on collecting information to assess patient outcomes. A key part of this document is real-world case examples that serve to teach others and to illustrate key principles of registry design, operation, and evaluation. The intent for including case examples in the handbook is to demonstrate different strategies and perspectives to address common challenges. Of particular interest are registries that provide evidence for the evaluation of the effects of medical interventions on health care outcomes (such as effectiveness, safety, value, quality of care).

AHRQ is revising the Handbook and plans to update it with contemporary case examples. We invite you to nominate a case example for consideration for inclusion in this second edition of the Handbook. Case studies will be chosen for inclusion based on didactic value in illustrating specific issues and challenges in registries.

Submission and Review Process

We are seeking case studies for possible inclusion in the second edition of the Handbook. To nominate a case study for review, authors should first send an abstract to the email address listed below. The full text of the first edition of the Handbook and case examples can be read online at AHRQ's Effective Health Care website. We are specifically looking for case examples on the following topics:

Linking Registry Data: Technical and Privacy Issues
Creating Electronic Interfaces between Patient Registries and Electronic Medical Records
When Should a Registry End?
Use of Registries for Adverse Event Detection and Evaluation
If you have any other case examples that illustrate important issues in the planning, design, conduct, analysis or interpretation of patient registries, these case examples would also be gratefully accepted for consideration for inclusion in the second edition of the handbook.

Authors of case studies that are included will be acknowledged. No anonymous case studies will be accepted. All case studies will also reference the name of the sponsor of the registry if other than the author. Authors are responsible for obtaining any necessary permissions to submit a case study.

Abstracts should be no longer than 500 words, and may include the elements listed below. All abstracts that are submitted to

decide@outcome.com
on or before July 10, 2009 will be considered for possible inclusion in the second edition. Case study abstracts will be reviewed as they are received. Authors of cases studies may be contacted for additional information. If the case study is selected, authors will be asked to submit a draft of the case study on or before July 24, 2009.

Name of registry.
Condition or inclusion criteria.
Setting (hospital, outpatient clinics, etc).
Number of patients.
Length of follow-up.
Number of centers.
Sponsor or funding source.
Year started.
Overall purpose of registry.
Primary patient outcomes evaluated by registry (e.g. effectiveness, safety, value, quality of care, natural history of disease).
Brief description of the teaching points that will be highlighted in the case study.
Topic (of four listed above) that the case study fits most strongly.
Publication references (if available).
Notification of permissions obtained to submit this case study (if applicable).
Brief description of the teaching points that will be highlighted in the case study.
Topic (of four listed above) that the case study fits most strongly.
Publication references (if available).
Notification of permissions obtained to submit this case study (if applicable).
Thank you.

Effective Health Care Program

Please visit: http://effectivehealthcare.ahrq.gov