Sundheds- og Ældreudvalget 2015-16
SUU Alm.del
Offentligt
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Svar modtaget fra EMA pr. mail den 8. februar 2016
Question 2:
Comments on the Responsum by Dr Brinth
The Responsum document written by Dr Brinth and dated 15 December 2015 presents a detailed reply to
the PRAC Assessment Report (AR) on the referral concerning complex regional pain syndrome (CRPS)
and postural orthostatic tachycardia syndrome (POTS) in young women given human papillomavirus
(HPV) vaccines. However, it does not provide any new data or information in relation to the said HPV
vaccine referral. Therefore, the conclusions in the PRAC AR and the interpretation/analysis supporting
those conclusions are not affected.
More specifically, please note that Sections 2.1 to 2.3 of the Introduction of the Responsum document
are background sections that do not provide any new data or information that is pertinent to the HPV
vaccine referral.
Section 3 presents the work and approach of the Syncope Unit at Bispebjerg and Frederiksberg Hospital
(Section 3.1) and also provides further information and some clarification of the chronology of the first
two papers from Dr Brinth and her colleagues (Section 3.2).
Some of the comments made in this document suggest that there are several aspects of the PRAC
discussion regarding the Brinth publications that appear to have been misunderstood; for example, case
series methodology will always suffer from important limitations as it lacks a comparator group and also
are known to be vulnerable to selection bias, regardless of whom conducts the analysis. The latter
remains an issue with the Brinth and colleagues case series despite the efforts that they took to minimise
this; another example is that Dr Brinth took as direct criticism of the work, the potential of
misinterpretation of data due to the likelihood of recall bias, which is something innate to the used
methods, and is partly driven by the patient awareness.
The document does highlight that there are possibly many more cases that have been referred to the
Syncope Unit (the figure of 650 included in figure on page 16), but no further information on these cases
and whether or not they occurred in HPV vaccinated individuals have been provided. However, the
observed versus expected scenarios for Denmark suggested that the 650 figure included by Dr Brinth is
within the range of expected scenarios. Furthermore, as both POTS, CRPS and Chronic fatigue syndrome
(CFS) are issues that remain under close scrutiny and will be subject to updated observed versus
expected analyses, any further cases reported to regulatory authorities or industry will be factored into
future regulatory assessment and decision making.
The approach taken in this referral procedure by applying the observed versus expected analysis allowed
the PRAC to use the most sensitive detection of a possible excess of the natural background rates and
account for a range of possible under-reporting up to 99%.
Regarding Section 4 of the document provides Dr Brinth’s, it comments on how it is alleged that the
PRAC has misunderstood and, in some places, misinterpreted the Uppsala Monitoring Centre (UMC)
report. We would like to note that what is included in the PRAC AR reflects the assessment of the PRAC
and therefore the PRAC took into account the data from UMC accordingly.
In addition, Section 5 of the Responsum document highlights what is considered as an apparent
discrepancy between what is included in the European public assessment report (EPAR) for Gardasil 9
and the PRAC AR with regards to cases of POTS and CRPS (3 cases of POTS and 1 of CRPS quoted in the
EPAR but only 2 cases of POTS quoted in the PRAC AR). In this respect, we would like to clarify that the
SUU, Alm.del - 2015-16 - Endeligt svar på spørgsmål 176: Spm. om kommentar til det responsum, Louise Brinth fra Synkopecenteret har udarbejdet ift. EMAs undersøgelse, til sundheds- og ældreministeren
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one case difference in these figures is owing to that case being reported by the Danish authorities to the
marketing authorisation holder (MAH) after the study was completed. The identity of this subject was not
verified at the time of authorisation for Gardasil 9, and additional information had been requested.
However, at the time of the HPV vaccines referral, the identity of this case was still not verified, and
therefore the subject was not included among the cases.
Section 5 also highlights a potential misunderstanding of the nature of the Donegan and colleagues study
and questions whether the results of this study that examined Cervarix can be applied to Gardasil.
Overall, the concluding remarks in this Section 5 basically pose the same question as in the PRAC AR, i.e.
the need for a broader look at fatigue-related conditions.
Regarding the comments in Section 5 on the Scientific Advisory Group (SAG) consultation, please note
that the report of the SAG was part of the PRAC AR and made publicly available. In addition, the
Mandate, Objectives and Rules of Procedure document of the SAG was followed as usual. This document
is available in the EMA website together with other supportive documents (available at
http://www.ema.europa.eu/ema/index.jsp?curl=pages/contacts/CHMP/people_listing_000116.jsp&mid=
WC0b01ac058058f32e).
Moreover, we would like to point out that Eudravigilance data were assessed in this review, as stated in
the PRAC AR, and the literature review was independently done by the assessing teams and the EMA, in
addition to the ones submitted by the MAHs.
Likewise, Section 6 and Section 7 also do not provide new data or information. Section 6 discusses
different hypotheses, and agrees that the overall data does not merit a different interpretation; and in
Section 7, Dr Brinth reflects on the current situation regarding the HPV vaccines and the available data,
suggesting further questions that may be of interest to the academic/medical community.
Question 3:
SAG Confidentiality.
The obligations of SAG members regarding confidentiality are described in section 3 (Confidentiality
undertaking) of the document ‘Public Declaration of Interests and Confidentiality Undertaking’, linked
below:
http://www.ema.europa.eu/docs/en_GB/document_library/Template_or_form/2014/12/WC500178504.p
df
This document is signed by each individual SAG member prior to any SAG meeting.
Please note that the terms confidential information and confidential documents, to which confidentiality
applies, are also clarified:
“Confidential Information
means all information, facts, data and any other matters of which I
acquire knowledge, either directly or indirectly, as a result of my EMA Activities.”
“Confidential Documents
mean all drafts, preparatory information, documents and any other
material, together with any information contained therein, to which I have access, either directly or
indirectly, as a result of my participation in EMA Activities. Furthermore, any records or notes made by
me relating to Confidential Information or Confidential Documents shall be treated as Confidential
Documents.”
In addition, the document clarifies that:
SUU, Alm.del - 2015-16 - Endeligt svar på spørgsmål 176: Spm. om kommentar til det responsum, Louise Brinth fra Synkopecenteret har udarbejdet ift. EMAs undersøgelse, til sundheds- og ældreministeren
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“This undertaking shall not be limited in time, but shall not apply to any document or information that
I can reasonably prove was known to me before the date of this undertaking or which becomes public
knowledge other than as a result of a breach of any of the above undertakings.”
Therefore the SAG attendees need to be careful not to reveal confidential information (including names of
other attendees) and not to disclose confidential documents based on the definitions given above. As you
are aware, the PRAC assessment report for the HPV vaccines referral has been published and it includes
the full SAG responses to the PRAC questions.
Please also note what is mentioned in the
SAG Mandate, objectives and rules of procedure
document regarding confidentiality, which can be found publicly available here:
http://www.ema.europa.eu/ema/index.jsp?curl=pages/contacts/CHMP/people_listing_000116.jsp&mid=
WC0b01ac058058f32e,
and in which it is further clarified:
“The Members of the SAG as well as observers and all experts shall be bound, even after the cessation
of their duties, not to disclose any information, which, by its nature, must be covered by individual
professional secrecy. The EMA Guidance on Confidentiality and Discretion applies. SAG members when
participating in meetings or other fora on behalf of the Committee, shall ensure that the views
expressed are those of the Committee. When they are participating not on behalf of the Committee,
they shall make clear that the views expressed are their own.”
The SAG Mandate, objectives and rules of procedure document is applicable to all SAGs and it is not
solely applicable in the case of SAG-Vaccines (see link
http://www.ema.europa.eu/ema/index.jsp?curl=pages/about_us/general/general_content_000102.jsp&
mid=WC0b01ac058002d0ec
).
Should you need further information, please do not hesitate to contact the EMA.