STUDY OF PATIENTS WITH RARE AND COMMON DISEASES: EXPERIENCES WITH RESEARCH, DIAGNOSIS AND TREATMENTS

ICR 198802-0937-002

OMB: 0937-0184

Federal Form Document

Forms and Documents
Document
Name
Status
No forms / supporting documents in this ICR. Check IC Document Collections.
ICR Details
0937-0184 198802-0937-002
Historical Active
HHS/OASH
STUDY OF PATIENTS WITH RARE AND COMMON DISEASES: EXPERIENCES WITH RESEARCH, DIAGNOSIS AND TREATMENTS
New collection (Request for a new OMB Control Number)   No
Regular
Approved without change 04/25/1988
Retrieve Notice of Action (NOA) 02/24/1988
Approved as revised with the following further conditions: (1) Sampling revisions are made per recommendations of NCHS, (2) Questions 7a and 8 are revised to include the term "extreme financial hardship", (3) Question 7b is revised to read "...treatment during the last year", (4) Question 24 is revised by substituting the word "information" for "research", (5) Question 24a is revised to read, "Establish a privately-funded...." (6) Question 24d-g are deleted, and (7) Question 24h is revised to read, "Is it your understanding that in life-threatening situations, Federal rules permit patients with a rare disease...."
  Inventory as of this Action Requested Previously Approved
09/30/1988 09/30/1988
800 0 0
533 0 0
0 0 0

TO DEVELOP RECOMMENDATIONS FOR THE ADMINISTRATION AND CONGRESS, THE NATIONAL COMMISSION ON ORPHAN DISEASES PROPOSES TO SURVEY PATIENTS WITH ORPHAN (RARE) AND COMMON DISEASES TO IDENTIFY DIFFICULTIES THEY MAY HAVE HAD IN BEING DIAGNOSED ACCESSING INFORMATION ABOUT THEIR ILLNESS, OR LEARNING ABOUT ONGOING RESEARCH AND NEW TREATMENTS.

None
None


No

1
IC Title Form No. Form Name
STUDY OF PATIENTS WITH RARE AND COMMON DISEASES: EXPERIENCES WITH RESEARCH, DIAGNOSIS AND TREATMENTS

  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 800 0 0 800 0 0
Annual Time Burden (Hours) 533 0 0 533 0 0
Annual Cost Burden (Dollars) 0 0 0 0 0 0
Yes
No

$0
No
No
Uncollected
Uncollected
Uncollected
Uncollected

  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.
02/24/1988


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