NCATS GRDR ¿Program: Global Rare Diseases Patient Registry Data Repository (GRDR)

ICR 201501-0925-001

OMB: 0925-0713

Federal Form Document

Forms and Documents
Document
Name
Status
Form and Instruction
New
Form
New
Form
New
Supplementary Document
2015-01-09
Supplementary Document
2015-01-09
Supporting Statement A
2015-03-11
IC Document Collections
ICR Details
0925-0713 201501-0925-001
Historical Active
HHS/NIH
NCATS GRDR ¿Program: Global Rare Diseases Patient Registry Data Repository (GRDR)
New collection (Request for a new OMB Control Number)   No
Regular
Approved with change 03/20/2015
Retrieve Notice of Action (NOA) 01/26/2015
  Inventory as of this Action Requested Previously Approved
03/31/2018 36 Months From Approved
3,100 0 0
334 0 0
0 0 0

The NIH created the GRDR Program https://grdr.ncats.nih.gov/ an informatics system and central data repository, housed at the NCATS/NIH Center to support and accelerate research in the cause, diagnosis, and treatment of rare diseases. The GRDR Program collects a wide range of data types, including phenotypic, clinical, and genomic, as well as medical images, derived from individuals who participate in rare disease patient registries, regardless of the source of funding.

US Code: 42 USC 203, 241,2891-1 Name of Law: Public Health Service Act
  
None

Not associated with rulemaking

  79 FR 44185 07/30/2014
80 FR 2110 01/15/2015
No

3
IC Title Form No. Form Name
screenshot open access 2 Request for Open Access
GRDR Submission Request 3 GRDR Submission Request
screenshot control access 1 Control Access

  Total Approved Previously Approved Change Due to New Statute Change Due to Agency Discretion Change Due to Adjustment in Estimate Change Due to Potential Violation of the PRA
Annual Number of Responses 3,100 0 0 3,100 0 0
Annual Time Burden (Hours) 334 0 0 334 0 0
Annual Cost Burden (Dollars) 0 0 0 0 0 0
Yes
Miscellaneous Actions
No
This is a new data collection.

$22,680
No
No
No
No
No
Uncollected
Tawanda Abdelmouti 240 276-5530 ta401@nih.gov

  No

On behalf of this Federal agency, I certify that the collection of information encompassed by this request complies with 5 CFR 1320.9 and the related provisions of 5 CFR 1320.8(b)(3).
The following is a summary of the topics, regarding the proposed collection of information, that the certification covers:
 
 
 
 
 
 
 
    (i) Why the information is being collected;
    (ii) Use of information;
    (iii) Burden estimate;
    (iv) Nature of response (voluntary, required for a benefit, or mandatory);
    (v) Nature and extent of confidentiality; and
    (vi) Need to display currently valid OMB control number;
 
 
 
If you are unable to certify compliance with any of these provisions, identify the item by leaving the box unchecked and explain the reason in the Supporting Statement.
01/26/2015


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