Woodruff Memorial Building, Ste 6000
101 Woodruff Circle
Atlanta GA, 30322
404-727-3381
Data/Sample Request and Agreement Form
I am requesting access to the Dystonia Coalition data/samples described in this form for the
research purposes described. I agree to follow the policies described in the Dystonia Coalition
Constitution and Bylaws document with regards to these data/samples. I have been provided a
copy of that document and have read it. In particular, I have read through the ‘Data and Resource
Sharing’, ‘Authorship, Acknowledgements, and Reporting’, ‘Copyright and Patent’, ‘Specific Terms
and Conditions for Resources Provided through the Dystonia Coalition’, ‘Protection of Human
Subjects in Research’, and ‘Conflict of Interest’ sections.
My institution and at least one investigator at my institution have signed the Dystonia Coalition
Constitution, Bylaws, Terms & Conditions document and I agree to follow the policies outlined
there.
Investigators Statement of Agreement
By signing below I acknowledge that I have carefully read this document and agree:
1. To abide by the guidelines for accessing and using data or materials outlined above.
2. To abide by the decision of the Project Committee, Executive Committee, and/or Steering
Committee.
3. To not distribute or communicate any privileged information without consent of the Executive
Committee. Privileged information may include findings from unpublished studies or
presentations by any and all members of the DC.
Name of Requestor
Signature of Requestor
Date
Please email completed form to Ami Rosen, MS, CGC at [email protected].
Vs 7: 23 Novemeber 2015
Page 1 of 4
Woodruff Memorial Building, Ste 6000
101 Woodruff Circle
Atlanta GA, 30322
404-727-3381
Data/Sample Request and Agreement Form
Project Title:
Principal Investigator Information
Name:
Position Title:
Department:
Institution:
Street Address:
City, State, Zip code:
Country:
Telephone:
Email:
Study coordinator or contact information (if different from PI)
Name:
Position Title:
Email:
Telephone:
Project Description (attach description in one page letter)
Does the project have IRB/ethics board approval?
Yes (please attach approval letter)
Does the project have financial support from the DC?
If yes,
Career Development Award
Federal
No
Pilot Project
Does the project have other financial support?
If yes,
Yes
Yes
Industry
No
Other:
No
Foundation/nonprofit
Internal/departmental
Other:
Funding agency:
PI Name:
Grant Title:
Grant Number:
Funding Period:
Resources being requested (check all that apply):
Data
Vs 7: 23 Novemeber 2015
Video
Samples (how much DNA?) ___________________
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Woodruff Memorial Building, Ste 6000
101 Woodruff Circle
Atlanta GA, 30322
404-727-3381
Specific data requested:
Subject criteria: (e.g., “cervical dystonia subjects, ages 18-45, all female, no family history of
tremor”, “all cervical dystonia subjects with BDI-II completed”, “all subjects with task specific
dystonia reported”)
Age range:
Age at onset range:
Gender:
Male
Female
Additional information:
Which data sets? (check all that apply):
NH-ES follow-up
BR
NH-ES
NH-LS follow-up
P2
NH-LS
P3
P4
Which forms?
Intake Form:
Part I – Participant Details (specify) ______________________________________________
Do you need Gender? Yes / No (please circle)
Part II – Intake (specify) _______________________________________________________
Part III – Dystonia History and Other Medical Conditions (specify) ______________________
Part IV – Examination (specify) __________________________________________________
Part V – Family History (specify) _________________________________________________
Rating Scales:
Fahn Marsden
Jankovic Rating Scale (P4 only)
Global Dystonia Rating Scale
Blepharospasm Severity Scale (P4 only)
TWSTRS-R (P2 only)
Blepharospasm Diagnosis Scale (P4 only)
Spasmodic Dysphonia-DAP (P3 only)
Questionnaires:
Beck Depression Index-II
Craniocervical Dystonia Questionnaire-24 (P4 only)
Hosp. Anxiety & Depress. Scale
Oromandibular Dystonia Questionnaire-25 (P4 only)
Liebowitz Social Anxiety Scale
Obsessive Compulsive Inventory-R (P4 only)
Patient Health Questionnaire-9
Blepharospasm Psych Screening Questions (P4 only)
Short Form Health Survey-36
Blepharospasm Screening Questions (P4 only)
CD Impact Profile-58 (P2 only)
Eye Symptoms in Blepharospasm (P4 only)
Structured Clinical Int. for DSM (P2 only)
Format of data:
Excel
Blepharospasm Disability Index (P4 only)
CSV (comma delimited)
FedEx# (required if shipping samples) _____________________________________________________
Vs 7: 23 Novemeber 2015
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Woodruff Memorial Building, Ste 6000
101 Woodruff Circle
Atlanta GA, 30322
404-727-3381
Office Use Only
Type of transfer done:
De-identified data transfer: Date(s)
Video access: Number of videos:
DNA Samples: Number of samples:
Vs 7: 23 Novemeber 2015
Page 4 of 4
Date(s): from
to
Amount of DNA: