Data/Sample Request and Agreement Form

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 Privileged information may include findings from unpublished studies or presentations by any and all members of the DC.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 .

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) No

Does the project have financial support from the DC? Yes No

If yes, Career Development Award Pilot Project Other:

Does the project have other financial support? Yes No

If yes, Federal Industry Foundation/nonprofit

Internal/departmental Other:

Funding agency:

PI Name:

Grant Title:

Grant Number: Funding Period:

Resources being requested (check all that apply):

Data Video Samples (how much DNA?) ______

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): BR NH-ES NH-LS

NH-ES follow-up NH-LS follow-up P2 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:

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Woodruff Memorial Building, Ste 6000

101 Woodruff Circle

Atlanta GA, 30322

404-727-3381

Fahn Marsden

Global Dystonia Rating Scale

TWSTRS-R (P2 only)

Spasmodic Dysphonia-DAP (P3 only)

Jankovic Rating Scale (P4 only)

Blepharospasm Severity Scale (P4 only)

Blepharospasm Diagnosis Scale (P4 only)

Vs 7: 23 Novemeber 2015 Page 4 of 4

Woodruff Memorial Building, Ste 6000

101 Woodruff Circle

Atlanta GA, 30322

404-727-3381

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) Blepharospasm Disability Index (P4 only)

Format of data: Excel CSV (comma delimited)

FedEx# (required if shipping samples) ______

Office Use Only

Type of transfer done: De-identified data transfer: Date(s)

Video access: Number of videos: Date(s): from to

DNA Samples: Number of samples: Amount of DNA:

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