Data Network Request

Data Network Request

Note: This form is provided to preview the questions prior to beginning the on line submission process.

DATA NETWORK REQUEST

Please complete this form if you are interested in working with PCORnet and its Distributed Research Network (DRN) to obtain aggregated results. Please contact the PCORnet Front Door if you have any questions at .

# / Question / Response
1 / Request Date
Principal Investigator / Requester Information
2 / First Name
3 / Last Name
4 / Title
5 / Requesting Institution / Organization
6 / Email Address
7 / Phone Number
8 / Mailing Address
9 / City
10 / State
11 / Zip Code
12 / Would you like to provide a second contact for correspondence? / ☐Yes
☐No
If yes, please provide email address
13 / Does this request originate from a PCORnet CDRN (Clinical Data Research Network) or PPRN (Patient Powered Research Network)? / ☐No
☐Yes, CDRN
☐Yes, PPRN
If Yes, this request originates from a CDRN, select the CDRN. / ☐ADVANCE
☐CAPriCORN
☐ GPC
☐LHSNet
☐Mid-South
☐ NYC
☐OneFlorida
☐ PaTH
☐ PEDSnet
☐PORTAL
☐pSCANNER
☐ REACHnet
☐SCILHS
If Yes, this request originates from a PPRN, select the PPRN. / ☐ABOUT
☐AR-PoWER
☐CCFA
☐CENA
☐Community and Patient-Partnered Centers of Excellence forBehavioral Health
☐COPD
☐DuchenneConnect
☐Health eHeart Alliance
☐ImproveCareNow
☐Interactive Autism Network
☐Mood
☐Multiple Sclerosis
☐National Alzheimer’s and Dementia Patient and Caregiver-Powered Research Network
☐NephCure Kidney Network
☐PARTNERS
☐Phelan-McDermid Syndrome Data Network
☐PI-CONNECT
☐PRIDEnet
☐Rare Epilepsy Network
☐SAPCON
☐Vasculitis
14 / Is this request from a PCORnet Collaborative Research Group (CRG)? / ☐Yes
☐No
If yes, select CRG / ☐ Autoimmune and Systemic Inflammatory Syndromes
☐ Behavioral Health
☐ Cancer
☐ Cardiovascular Health
☐ Diabetes and Obesity
☐ Health Systems, Health Policy and Public Health
☐ Hospital Medicine
☐ Kidney Health
☐Pediatrics
☐ Pulmonary
☐Health Disparities
☐Other, define:
15 / Is this request from the PCORnet Coordinating Center? / ☐Yes
☐No
16 / Proposed Research Project Title
17 / Area(s) Being Studied
/ ☐Pediatrics
☐ Cardiovascular
☐Health Disparities
☐ Cancer
☐Behavioral Health
☐ Gastroenterology
☐Autoimmune
☐ Neurosciences
☐Pulmonary
☐ Healthcare Delivery
☐Obesity/Diabetes
☐ Renal
☐ Rare Diseases, Specify:
☐Other, Specify:
18 / Describe the information you are seeking.
19 / Have you participated in or done prior research in another distributed research network (e.g., Sentinel, etc.)? / ☐Yes
☐No
If yes, please explain
20 / Has your team developed a “computable phenotype” or other analysis code that you would like to use for this query? / ☐Yes
☐No
If No, the PCORnet Coordinating Center can help you develop analysis code.
Please describe the query you would like to develop, in detail, referencing the most current version of the PCORnet Common Data Model.
21 / Do you require results stratified by Network or contributing institution? / ☐Yes
☐No
If Yes, do you require the identities of each Network or contributing institution, or are blinded results adequate? / ☐Identities of Each Network or Contributing Institution
☐Blinded Results
22 / Please justify your needs for stratification and identification.
23 / Is the eventual purpose of this data to create a research proposal? / ☐Yes
☐No
If Yes, who is the likely sponsor? / ☐PCORI
☐NIH
☐Foundation
☐Industry
☐Other, Specify
24 / What time frame do you want the data analysis to encompass? (data collection within what time frame)
25 / By what date do you need these results?
26 / Describe the purpose and how you plan to use the data.
27 / What type of data you are requesting? / ☐Aggregate, deidentified data
☐Limited Data Set (LDS)
☐Protected Health Information (PHI)
28 / If aggregate, deidentified data:
I agree to use the data ONLY for the purpose described in this request.
Note: A data use/data transfer agreement will be required for requests containing LDS or PHI. / ☐Yes
☐No

12/9/2016

FD-F3-002 V.1