The AED Research-Practice Committee (RPC) is pleased to announce the launch of two exciting initiatives developed to promote research-practice integration within the AED and the field of eating disorders: 1) the AED Research-Practice Data Network, and 2) the Clinical Measures Toolkit for Clinicians.

The Clinical Measures Toolkit for Clinicians provides information about standardized assessment and treatment outcome measurement tools that can be administered easily by clinicians through the normal course of treatment.  Information about how to obtain the tools is provided along with brief descriptions of each tool's design, purpose, and suggested schedule of administration

The AED Research-Practice Data Network posts contact information for AED members willing to contribute unused data collected from their treatment programs/practices to research and/or who are willing to collect data for research.

Information regarding patient consent and confidentiality, and the process of ethics approval is included with both of these resources.

These initiatives are part of the RPC's ongoing effort to implement the AED Research-Practice Integration Guidelines and Action Plan released in 2009. The RPC welcomes member participation, feedback and suggestions regarding these and other research-practice issues.

Please e-mail your ideas to RPC co-chairs Judith Banker (banker@umich.edu) and Kelly Klump (klump@msu.edu).

Watch for updates to this site!  Coming soon:  Case Studies -- How to capture and convey disciplined clinical observation.

AED Data Network

Welcome to the launch of the new AED Data Network.  Sponsored by the AED Research-Practice Committee, this resource posts information regarding unused clinical or research data members are willing to share and member collaboration interests.  If you  have access to unused clinical or research data that you would like to share, if you are interested in collecting data or if you would like to collaborate or receive consultation regarding the analysis of unused data, contact Judith Banker, banker@umich.edu to participate in the AED Data Network.  

 Resource  Contact  Sample  Type of Data  Areas of Interest
Avalon Hills Residential Eating Disorders Program
8530 South 500 W
Paradise, Utah 84328
USA
Phillip Ryan Mitchell
ryanm@avalonhills.org
Ph (435)575 0434
Fax (435) 575 0439

No. of participants: 32-97
Female
Age: 11-47
Dx: AN & BN
Residential treatment

 

Quantitative, computerized
Set A (2007 to present)
EDI-III
Beck Dep. Inv.-II
SF-36v2 Health Survey
EDQL
Acceptance & Action Q-II
Beck Anxiety Inventory
Eating Disorders Diag. Scale
Set B (2009 to present)
BI Acceptance & Action Q
Five Facets of Mindfulness Q
Ob..Comp. Inventory – Rev.
Perceived Social Support –
     Family Questionnaire
Schedule:  at intake, discharge with 6-12 month follow up
Seek research
and/or statistical
consultation and
collaboration to
analyze and
report on data
Wilkins Center
7 Riversville Road
Greenwich, CT 06831
USA
www.WilkinsCenter.com
Diane Mickley, MD, FACP, FAED
dmickley@aol.com 
Ph (203) 531-1090
Fac (203) 531 7449
No. of participants:  500+
All ages
Male and female
AN, BN, EDNOS
Outpatient
Intake information, blood work, demographic data  Willing to share data

University of Iowa
Eating Disorders Program
Dept. of Psychiatry
200 Hawkins Drive 2941 JPP
Iowa City, IA 52242
USA

 

Wayne Bowers, PhD, FAED
Wayne-bowers@uiowa.edu
Ph (319) 353 6301

No. of participants: 100+
Inpatient

 

Several years worth or more of pre and post treatment EDI-2 results and detailed psychological data  Willing to share/collaborate
Outpatient private practice
Denise Heebink, MD
25 Central Park West
Suite 1L
New York, NY 10023
USA
Denise M. Heebink MD
Denise.heebink@gmail.com
Ph (212) 956 6327
Fax (212) 662 7613
Mixed outpatient population Clinical record data Willing to share/collaborate
Eating Disorders: The Journal of Treatment and Prevention
5145-B Avenida Encinas
Carlsbad, CA 92008
USA
Leigh Cohn, MAT, CEDS
Leigh@gurze.net
Ph (760) 434 7533
Database of rejected submissions from past 18 years,  many of which may have useful data.    Will notify authors of future rejected submissions about the Data Network

South Island Eating Disorders Service
Princess Margaret Hospital
Christchurch, Canterbury
New Zealand

 

Geoffrey Buckett, PhD, FAED
Geoffrey.bucket@cdhb.govt.nz
Ph +64 3 337 7707
10-20 years of treatment outcome data from service
AN, BN, EDNOS
Willing to share/collaborate


Clinical Measures Toolkit

 Instrument  Type  Summary  Time  Availability
Eating Disorders Examination Questionnaire 6.0, EDE-Q6 Diagnostic Aide
Self-report questionnaire
Provides data on key behavioral features of ED (i.e., binge-eating, compensatory behaviors) and subscale scores reflecting severity of ED psychopathology
 
15 mins Available at no cost on the AED website here 
Eating Disorders Attitude Test, EAT-26 Diagnostic Aide
Self-report questionnaire
Provides cutoff score for clinical threshold of ED 10 mins Available at no cost at www.psychcentral.com
         
Body Shape Questionnaire, BSQ Body Image
Self-report questionnaire
Designed to assess negative feelings about one’s body size and shape. 10 mins Available at no cost on the AED website here 
Appearance Schemas Inventory Revised (ASI-R) Body Image
Self-report questionnaire

Evaluates clinically significant symptoms associated with eating disorders (e.g., Drive for Thinness, Social Insecurity, Overcontrol).

 

15 mins Available for order (with manual) for $20 at following website:
www.body-images.com/assessments/order.html
         
Eating Disorders Inventory III (EDI-III) ED Psychopathology
Self-report questionnaire
Asks questions about behaviors that are related to bulimia, specifically binge-eating, in order to determine the presence and severity of the disease and provide greater description of behaviors.
20 mins

Introductory Kit available for order (with manual) at following website: http://www4.parinc.com/Products/Product.aspx?ProductID=EDI-3

Bulimic Investigatory Test, Edinburgh (BITE) ED Psychopathology
Self-report questionnaire
Assesses the presence and intensity of depression over the past two weeks. 10 mins Available at no cost on the AED website here 
         
Beck Depression Inventory II (BDI-II)
Comorbid Disorders
Self-report questionnaire
Used to measure and define “state” versus “trait” anxiety, and also to distinguish between anxiety and depression 5 mins Complete kit available for order at following website:
http://www.pearsonassessments.com/HAIWEB/Cultures/en-us/Productdetail.htm?Pid=015-8018-370&Mode=summary
State Trait Anxiety Inventory (STAI) Comorbid Disorders
Self-report questionnaire
Used to measure and define “state” versus “trait” anxiety, and also to distinguish between anxiety and depression 10 mins Starter kit and manual available for order at following website: http://www.mindgarden.com/products/staisad.htm
       
Dimensional Assessment of Personality Pathology-Basic Questionnaire (DAPP-BQ) Personality
Self-report questionnaire
Identifies trait dimensions underlying personality disorders that map onto DSM-IV Axis II disorders 45 mins Questionnaire available for order at following website. Options for manual or mail in or fax scoring.
http://www.sigmaassessmentsystems.com/
Neuroticism Extraversion Openness Five Factor Inventory (NEO-FFI) Personality
Self-report questionnaire
Used to understand emotional, interpersonal, experiential, attitudinal, and motivational styles by assessing five major domains of personality. 20 mins Questionnaire available for order at following website. Options for versions (i.e., men, women)
www.sigmaassessmentsystems.com/
         
 SF-36 Health Survey General Health
Self-report questionnaire
Used to assess overall health and general well-being 10 mins Questionnaire available at the following website. Options for versions (i.e., men, women, college age)
www.sigmaassessmentsystems.com/
The Quality of Life Enjoyment and Satisfaction Questionnaire Short Form (Q-LES-Q SF) General Health
Self-report questionnaire
Designed to examine overall happiness and functioning in various areas. Recommended for those suffering from depression 5 mins Available at no cost at www.outcometracker.org/library/Q-LES-Q-SF.pdf
Eating Disorders Quality of Life Scale (EDQLS)
General Health
Self-report questionnaire
Designed to measures the quality of life of adolescents and adults with EDs. 5 mins

Free for publicly funded or non-profit organizations, fee for manual. Registration at: www.edqls.com

         
Rosenberg’s Self Esteem Scale (RSE) Misc.
Self-report questionnaire
Brief questionnaire measuring self-esteem 5 mins Available at no cost at www.selfesteem2go.com and the AED website here 
Readiness and Motivation Interview for Eating Disorders (RMI) Misc.
Self-report questionnaire
Used to obtain a readiness profile for pts. based on their motivational status for each ED sx. 30-60 mins Available at no cost through reference article cited or by contacting author on article
Autonomous and Controlled Motivation for Treatment Questionnaire (ACTMQ) Misc.
Self-report questionnaire
Measures autonomous and controlled motivation for treatment 5 mins Available at no cost from david.zuroff@mcgill.ca
Family Environment Scale (FES) Family/Systems
Clinician administered interview
Evaluates the social environment of the family unit 15 mins Interview available for order at the following website:
http://www.mindgarden.com

 

Informed Consent for Clinical Research

The use of data from a single individual or a sample of individuals for research purposes requires informed consent, whether the data are collected within a research setting or from patients in a clinic, private office, or hospital setting.

Informed Consent Process
Informed consent usually includes written consent for those over the age of consent (e.g., age 18 in the USA, and Europe), and for those under the age of consent, written assent and consent from the participant and a parent, respectively. Requirements for the informed consent process vary by country and institution.  Researchers and clinicians who are interested in collecting and publishing clinical and research data should be aware of the need to check with local practices and institutions for guidelines on the informed consent processes in their area.  Nonetheless, for examples of consent forms that are currently used in clinical settings to collect research data on patients, click here.

Review of Research and Consent/Assent Procedures by Ethical Committees
Most researchers are affiliated with a university or institution that has its own internal human participants committee or ethical committee that oversees the care of human research participants and reviews/approves research and consent procedures for all studies conducted within the institution.  However, clinicians may find themselves in the difficult position of not having access to a human participants or ethical committee who could review their research and consent/assent practices. This is problematic from a human participants’ perspective, but also in terms of eventually publishing the data in a scientific journal.  Many journals require that the authors name the human participants or ethical committee who reviewed and approved the research and consent process.  Without explicit review and approval of these procedures, the paper cannot be published in the journal.

Clinicians who do not have direct access to a human participants or ethical committee are encouraged to contact human participants or ethical committees at local universities and institutions to determine if review by these committees would be possible for an outside researcher.  Clinicians are also encouraged to contact colleagues in the field who do have access to these review boards to ask for guidance and possibly develop collaborations that would allow for human participants review by the colleague’s institution. 

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