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.
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.