This page contains copies of consent forms used by the Cambridge centre. Some centres had a slightly different initial approach but used similar documents on their own letterhead and modified where appropriate, to comply with Local Ethical Committee requirements.
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New forms of re-consent 2004 - for all centres
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Resource Implications Study consent form
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Wave 3 blood/saliva consent form
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Wave 3 medical record consent form
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CAMBRIDGESHIRE PROJECT FOR LATER LIFE
Department of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone 01223 330311
Fax: 01223 330330
CONSENT FORM
Respondent identifier:
Please Initial
I confirm that I have read and understood the information sheet (version 5 dated October 2000) for the above study and have had the opportunity to ask questions. |
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I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason, without my medical care or legal rights being affected |
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I understand that sections of any of my medical notes may be looked at by responsible individuals from MRC CFAS where it is relevant to my taking part in research. I give permission for these individuals to have access to my records. |
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I agree to continue to take part in the above study. |
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I understand that this interview is to be taped for training and quality control purposes. I agree to this interview being audio recorded. |
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All the information collected by the study is completely confidential and is stored
anonymously, without personal details. The blood samples and brain tissue are stored
securely and anonymised. Audio tapes are anonymised and used for training and
quality control purposes only and will be destroyed when no longer required.
Name of Respondent/ Date /Signature of Respondent
Interviewer name and number/ Date /Signature of Interviewer
Wave 4 relative/carer assent form
CAMBRIDGESHIRE PROJECT FOR LATER LIFE
Department of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone 01223 330311
Fax: 01223 330330
Form of Assent
Respondent name: Identifier:
Name of Relative/carer: Relationship to Respondent:
I have read the attached information sheet (version 5 October 2000) and have
been given a copy to keep. I have had the opportunity to ask questions about
the study and understand why the research is being done. I understand that this
is not a legal document.
I understand that ………………… consented to take part in this study in 1991/2,
and has not withdrawn consent since that date.
I confirm that, to the best of my knowledge, ……………………… has not changed
her/his mind since s/he gave her/his consent .
Please Initial
I confirm that I have read and understood the information sheet (version 5 dated October 2000) for the above study and have had the opportunity to ask questions. |
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I understand that …………………..’s participation is voluntary and that s/he is free to withdraw at any time, without giving any reason, without her/his medical care or legal rights being affected |
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I understand that sections of any of her/his medical notes may be looked at by responsible individuals from MRC CFAS where it is relevant to her/him taking part in research. I believe that s/he would not object to this. |
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I agree to …..………………. continuing to take part in the above study. |
Signature of Relative/carer Date
Interviewer name and number/ Date /Signature of Interviewer
Declaration of Intent for donor
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University of Cambridge CAMBRIDGE BRAIN BANK LABORATORY Pathology Laboratories Block, Level 3 (Histopathology) Addenbrooke’s Hospital, Hills Road, Cambridge CB2 2QQ Secretary (01223-762610) Answerphone (01223) 217336 Fax (01223) 762610 |
DECLARATION OF INTENT for DONOR
Have you read the attached information sheet on postmortem brain donation,and have you been given a copy to keep?
Have you been given the opportunity to ask questions about brain donation?
Do you understand that you can change your mind about brain donation any
time, without giving a reason or explanation, and without affecting your
medical care?
Do you wish to make a gift of your brain to medical research in the event of
your death?
Do you also wish to make a gift of cerebrospinal fluid and a blood sample to
medical research in the event of your death? These samples are used
primarily for excluding infection, thus ensuring the safety of research workers.
Are you aware that your gift of brain and related fluids will be placed in the
custody of the Cambridge Brain Bank Laboratory, which acts on behalf of the
University of Cambridge?
Your brain donation is intended primarily to support the research project
entitled: "The CFA Study, or the Cognitive Function and Ageing Study". Do
you agree that your gift of brain and related fluids may be used for other
research projects?
Research may involve genetic study any may lead to the discovery of genes
that predispose to, or protect against, disease. It is our policy that donor
identity is protected in this kind of research by withholding any information
that may identify the donor from the research workers. Genetic information is
not communicated to anyone outside the research project, even to relatives.
Do you agree that your gift of brain and related fluids may be used for genetic
research in this way? Development of new drug therapies and diagnostic
tests to the point where they can be made sufficiently widely available to
benefit human health can sometimes only be achieved with the involvement
of the commercial sector. Do you agree that your gift of tissue may be used
to help the commercial sector achieve these aims?
I confirm that, in the event of my death, I wish to donate my brain and related
tissues to the Cambridge Brain Bank Laboratory for use in medical research
as indicated above
Signed………………………………………… Date………………………………
Name in capitals……………………………………………
FOR OFFICE USE
Name of Donor: …………………………………………..
Address: …………………………………………………
Tel.No …………………………………………………….
Name of Next of kin ………………………………………
Relationship: ………………………………………………
Address: ………………………………………………………………
Tel.No …………………………………………………….
Name of Doctor: ………………………………………….
Address: …………………………………………………………
Tel.No …………………………………………………….
Declaration of Intent for next of kin
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University of Cambridge CAMBRIDGE BRAIN BANK LABORATORY Pathology Laboratories Block, Level 3 (Histopathology) Addenbrooke’s Hospital, Hills Road, Cambridge CB2 2QQ Secretary (01223-762610) Answerphone (01223) 217336 Fax (01223) 762610 |
DECLARATION OF INTENT for NEXT-OF-KIN
Have you read the attached information sheet on postmortembrain donation, and have you been given a copy to keep?
Have you been given the opportunity to ask questions about brain
donation?
Do you understand that you can change your mind about brain
donation any time, without giving a reason or explanation, and
without affecting medical care of your?
Do you wish to make a gift of your (enter relationship to, and
name of, donor)…………………………....’s brain to medical research
in the event of his/her death?
Do you also wish to make a gift of cerebrospinal fluid and a blood
sample to medical research in the event of his/her death? These
samples are used primarily for excluding infection, thus ensuring
the safety of research workers.
Are you aware that your gift of brain and related fluids will be
placed in the custody of the Cambridge Brain Bank Laboratory,
which acts on behalf of the University of Cambridge?
Your brain donation is intended primarily to support the research
project entitled: "The CFA Study, or the Cognitive Function and
Ageing Study". Do you agree that your gift of brain may also be
used for other research projects?
Research may involve genetic study any may lead to the
discovery of genes that predispose to, or protect against,
disease. It is our policy that donor identity is protected in this
kind of research by withholding any information that may identify
the donor from the research workers. Genetic information is not
communicated to anyone outside the research project, even to
relatives. Do you agree that your gift of brain and related fluids
may be used for genetic research in this way?
Development of new drug therapies and diagnostic tests to the
point where they can be made sufficiently widely available to
benefit human health can sometimes only be achieved with the
involvement of the commercial sector. Do you agree that your
gift of tissue may be used to help the commercial sector achieve
these aims?
I confirm that, in the event of the death of my …………………………
(enter relationship of donor and name of donor), I wish to donate
his/her brain and related fluids to the Cambridge Brain Bank
Laboratory for use in medical research as indicated above
Signed……………………………………………………… Date………………………………
Name in capitals……………………………………………
FOR OFFICE USE
Name of Donor: …………………………………………..
Address: …………………………………………………………
Tel.No …………………………………………………….
Name of Next of kin ………………………………………
Relationship: ………………………………………………
Address: ………………………………………………………………
Tel.No …………………………………………………….
Name of Doctor: ………………………………………….
Address: ………………………………………………………………
Tel.No …………………………………………………….
Information letter for Retrospective Informant Interview
MRC Cognitive Function and Ageing Study
Administrative Centre
Department of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone 01223 330311
Fax: 01223 330330
MRC CFAS
RETROSPECTIVE INFORMANT INTERVIEW
MRC CFAS is a large multicentre study of Health and Ageing that
started in 1991 - The Medical Research Council Cognitive
Function and Ageing Study. The aim of the study is to examine
how health and well-being changes with age and about what
might influence the different ways in which we age. From this
study we hope that we will be able to suggest ways in which the
health of older people can be improved in the future.
Your relative/friend contributed to the study greatly by allowing
us to visit them and interview them regularly. We were able to
collect unique and valuable information about them and their lives.
They also generously agreed to the examination of their brain
after death, we value this gift highly as it will enable us to look
at major causes of illness and frailty in older people and most
particularly those conditions which affect the brain tissues.
When we examine the donated tissue, we find it extremely helpful
to have some information about the final years of the donor's life.
We appreciate that this may upset or distress you and would be
happy to carry out the interview at your convenience. All the
information is strictly confidential, and will be held on our data files.
The interview would take approximately 45 minutes and will be
carried out by a Research Nurse/Interviewer, it can be conducted
by telephone if you prefer. There is no obligation to take part but
if you feel able to participate the information will be valued highly.
If you would like further information please contact Mrs Linda
Barnes, Research Nurse on 01223 330311.
Consent for Retrospective Informant Interview
MRC Cognitive Function and Ageing Study
Administrative Centre
Department of Public Health & Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone 01223 330311
Fax: 01223 330330
CONSENT FORM
RETROSPECTIVE INFORMANT INTERVIEW
Centre:…………………………………
Project Number………………………..
Please Initial
I confirm that I have read the information sheet version 3
Dated 26.6.03 and have been given a copy to keep.
I have had the opportunity to ask questions about the study
and understand why the research is being done.
I understand that…………………………..(enter relationship and name)
consented to take part in the study in 1991/2 and that they
agreed to brain donation after their death.
I am willing to give information on the final years of
my…………………….……….(enter relationship and name).
I understand that all the information collected is strictly confidential,
and will be held securely on the data files by the MRC CFAS Study.
…………………………………. …………………………….
Signature of Relative/Carer Date
…………………………………. ………………… ………………………….
Interviewer Name and number Date Signature of Interviewer
A collaborating centre in the Medical Research Council/ Cognitive
Function And Ageing Study (MRC CFAS)
New forms of re-consent 2004 - for all centres
MRC Cognitive Function and Ageing Study
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Administrative Centre
Department of Public Health and Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
MRC CFAS STUDY BRAIN DONATION
ASSENT
PROJECT NO……………………………
NAME OF DONOR…………………………………………………..
NAME OF NEXT OF KIN…………………………………………..
ADDRESS OF NEXT OF KIN………………………………………
…………………………………………………………………………
…………………………………………………………………………
RELATIONSHIP OF NEXT OF KIN………………………………
Please Initial
I have read the attached information sheet (Version 1/
March 04) and have been given a copy to keep. YES NO
I have been given an opportunity to ask questions about
brain donation. YES NO
The gift of brain donation is intended primarily to support the
research Project entitled "The CFA Study or the Cognitive
Function and Ageing Study "(Reworded as appropriate for
each centre)”. Do you agree that his/her gift may be used in
the future for related research projects as approved by a
Research Ethics Committee. YES NO
Project No………………………
Are you aware that his/her gift will be placed under the
custodianship of NHS Brain Banks supporting the CFAS study.
(Reworded as appropriate for each centre) YES NO
Research involving genetic study of tissues and cells may
lead to the discovery of genes that either predispose to, or
protect against, disease. I understand that using the sample
they give, may include genetic research aimed at understanding
the genetic influences on diseases related to ageing such as
Alzheimer's, but that the result of these investigations are unlikely
to have any implications for me personally. YES NO
Development of new drug therapies and diagnostic tests to
the point where they can be made sufficiently widely available
to benefit human health, can sometimes only be achieved with
the involvement of the commercial sector.
Do you agree that his/her gift of tissue may be used to help
the commercial Sector achieve these aims? YES NO
I understand that neither my family nor I will benefit financially
if this research leads to the development of a new treatment
or medical test. YES NO
International co-operation enables us to work with approved
collaborators worldwide to advance medical research. Do you
agree that we may send tissue abroad from his/her gift to
approved collaborators outside of the UK? YES NO
I know how to contact the research team if I need to, and
how to get information about the results of the research.
YES NO
Project No………………………
I believe that my ……………………………'s. (enter relationship of
donor) who consented to brain donation for medical research
in the past, would not object to these additional requirements
and would still wish to make the gift of his/her brain and
related fluids to NHS Brain Banks supporting the CFAS study
(Reworded as appropriate for each centre) for use in medical
research as indicated above.
Signed………………………………………………………………
Name in Capitals…………………………………………………...
Date…………………………………..
MRC Cognitive Function and Ageing Study
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Administrative Centre
Department of Public Health and Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
MRC CFAS STUDY BRAIN DONATION
DECLARATION OF INTENT for DONOR
PROJECT NO……………………………
NAME OF DONOR……………………………………………
Please Initial
I have read the attached information sheet (Version 3 Feb
04) and have been given a copy to keep. YES NO
I have been given an opportunity to ask questions about
brain donation YES NO
Do you wish to make a gift of your brain to medical
research. YES NO
The gift of brain donation is intended primarily to support
the research project entitled "The CFA Study or the
Cognitive Function and Ageing Study".
(Reworded as appropriate for each centre)
Do you agree that your gift may be used in the future for
related research Projects as approved by a Research
Ethics Committee. YES NO
Are you aware that your gift will be placed under the
custodianship of NHS Brain Banks supporting the CFAS
Study. (Reworded as appropriate for each centre)
YES NO
Research involving genetic study of tissues and cells may
lead to the discovery of genes that either predispose to,
or protect against, disease. I understand that using the
sample I give, may include genetic research aimed at
understanding the genetic influences on diseases related
to ageing such as Alzheimer's, but that the result of these
investigations are unlikely to have any implications for me
personally. YES NO
Development of new drug therapies and diagnostic tests to
the point where they can be made sufficiently widely
available to benefit human health, can sometimes only be
achieved with the involvement of the commercial sector.
Do you agree that your gift of tissue may be used to help
the commercial sector achieve these aims? YES NO
I understand that neither my family nor I will benefit
financially if this research leads to the development of a
new treatment or medical test. YES NO
International co-operation enables us to work with
approved collaborators worldwide to advance medical
research. Do you agree that we may send tissue abroad
from your gift to approved collaborators outside of the
UK? YES NO
I know how to contact the research team if I need to, and
how to get Information about the results of the research.
YES NO
I confirm that, I wish to donate my brain and related fluids
to NHS Brain Banks supporting the CFAS (Reworded as
appropriate for each centre) study for use in medical
research as indicated. YES NO
Signature……………………………………………………………
Name in Capitals……………………………………Date………..……………
Witness Signature…………………………………………………..
Name in Capitals……………………………………Date……………………….
CONTACT DETAILS
PROJECT NUMBER…………………………………………………
NAME OF DONOR…………………………………………………...
DATE OF BIRTH……………………………………………………..
ADDRESS……………………………………………………………..
………………………………………………………………………….
………………………………………………………………………….
TEL NO………………………………………………………………..
NAME OF NEXT OF KIN…………………………………………...
ADDRESS OF NEXT OF KIN……………………………………….
………………………………………………………………………….
………………………………………………………………………….
RELATIONSHIP TO DONOR……...……………………………….
TEL . NO………………………………………………………………
NAME OF DOCTOR…………………………………………………
SURGERY……………………………………………………………..
………………………………………………………………………….
TEL . NO………………………………………………………………
MRC Cognitive Function and Ageing Study
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Administrative Centre
Department of Public Health and Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
MRC CFAS STUDY
BRAIN TISSUE DONATION
INFORMATION FOR DONORS
You have very kindly in the past agreed to donate Brain
Tissue to help research into the Ageing process, and the
link with diseases such as Alzheimer's.
We hope that by asking these questions at an early
stage in our research has allowed your decision to be
made at a time when you and your family could ask as
many questions as you wished.
It is now many years since you considered and agreed
to Brain Donation, and there have been recent advances
in Medical research since then, and we would like to
inform you of these. This new information sheet covers
the new areas but also includes the old ones.
Genetic study may lead to discovery of genes that either
predispose to, or protect against, disease. The use of
your future gift may include research aimed at
understanding the genetic influences on diseases related
to ageing such as Alzheimer's. The results of these
investigations are unlikely to have any implications for
related individuals personally. Information on the findings
of such work will not be fed back to families. Significant
findings would need to be confirmed in further research,
and all the findings inform policy in the National Health
Service. This could include new screening and diagnostic
tests available to populations who would benefit, with
appropriate clinical and counselling support. We would
like to ask whether such genetic work could be carried
out on your gift.
Development of new drug therapies and diagnostic tests
to the point where they can be made sufficiently widely
available to benefit human health can sometimes only
be achieved with the involvement of the commercial
sector. Would you agree to this option?
We are now able through international co-operation to
work with approved collaborators worldwide to advance
medical research. Would you consider giving your
approval to export tissue from your gift to approved
collaborators outside of the UK?
It is not possible to anticipate the advances there may
be in the field of Medical Research or Ethics.
Your gift would only be used for research studies, which
have been approved by the Management Committee of
CFAS and the CFAS Advisory Committee, which includes
an independent scientist. These research proposals then
are considered by the Multi-Research Ethics Committee
and the Local Research Ethics Committees, which also
have to give approval before tissue can be released for
use.
If your next of Kin or caregiver has changed we would
be most grateful if you could make them aware of the
decision that you came to regarding Brain Donation so
that they may help us to carry out your wishes.
Below is some information we hope your and your family
will find useful.
Background
The CFAS study (Reworded as appropriate for each
centre) in which you have taken part is a large study that
has been ongoing since 1989 and involves people over 65
in six centres in Britain these include. Liverpool,
Newcastle, Nottingham, Oxford, Cambridgeshire and
Gwynedd.
The information collected through the interviews
conducted in the study will increase our knowledge of the
onset, course and risk factors for dementia and related
conditions in the older population as well as healthy and
frail ageing.
Some participants have been asked to consider donating
their brain after death. Those who felt able and willing
to donate their brain after death are making an
enormously valuable gift that will bring hope of a better
life to future generations. It was not an easy decision to
make and needed to be discussed with the family.
Potential donors were asked to sign a Declaration of
Intent. This is not a legally binding document, and
he/she is free to change his/her mind at any time. The
final decision to donate the brain has to be made by the
next of kin after the donor's death.
A very important aspect of the CFAS project is that we
ask older people not suffering from dementia to consider
our request as well as those with dementia. This is
crucial to understanding changes, which occur in the
brains of normal elderly people with those who have
dementia.
What effect will brain donation make on funeral
arrangements?
If you decide to proceed with a donation, a limited post-
mortem examination would take place in the hospital
mortuary. The donation is carried out as soon after
death as possible. This would not delay funeral
arrangements.
Your relative would be treated with great respect during
the post-mortem and the procedure does not disfigure
the body.
If a coroner has asked for a postmortem examination,
brain donation is still possible, we would contact the
coroner for their permission as well as your own to keep
and examine the brain. The donation will not cost the
family anything, as all costs will be met by the study.
Confidentiality
All the information collected by the study is completely
confidential and it is stored without personal details on
secure systems in compliance with the DPA 1998.
The brain tissue is stored separately and securely, the
gift will continue to be extremely valuable for research
for the foreseeable future. If the usage should come to
an end, any remaining part of the gift would be disposed
of with utmost respect.
Data collected by the study will only be analysed by
approved researchers.
This study has been considered by the Multi-centre
Research Ethics Committee and Local Research Ethics
Committees.
If you would like any further information or have any
questions please contact: -
Mrs Linda Barnes
Research Nurse
CFAS Administrative Centre
01223 330311
Professor Sir John Grimley Evans
Oxford Healthy Ageing Project
01865 224325
Professor Carol Brayne
Cambridgeshire Project for Later Life
01223 330311
Mrs Cherie McCracken
Alpha Study Liverpool
Gwynedd Project for Healthy Ageing
0151 706 4143
Professor James Lowe
Nottingham Health in Later Life study
0115 970 9269
Professor Ian McKeith
Newcastle Project for Health in Later Life
Brain Tissue Donation line 0191 222 3313
or look at our website: www-cfas.medschl.cam.ac.uk/
Information for male donor's relatives/carers
MRC Cognitive Function and Ageing Study
|
Administrative Centre
Department of Public Health and Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
MRC CFAS STUDY
BRAIN TISSUE DONATION
INFORMATION FOR RELATIVES/CARERS
In the past we approached your family member/next of
kin to discuss the ageing process and the links with
diseases such as Alzheimer's. We asked if he would be
willing to consider brain donation when he died to
further help the research. This was carefully considered
by your family member/next of kin and agreed upon and
he signed a general document indicating his wishes.
Because of recent advances in Medical Research, the
Multi-Centre Research Ethics Committee requires us to
seek additional and more specific approval for the use
of his gift. Below are some of the areas we have asked
him to consider as suitable uses for his gift.
Research involving genetic study may lead to the
discovery of genes that either predispose to, or protect
against disease. Use of the gift may include genetic
research aimed at understanding the genetic influences
on diseases related to ageing such as Alzheimer's. The
results of these investigations are unlikely to have any
implications for you or related individuals personally.
Information on the findings of such work will not be fed
back to families. Significant findings would need to be
confirmed in further research, but all the findings inform
policy in the National Health Service, this could result in
new screening and diagnostic tests available to
populations who would benefit, with appropriate clinical
and counselling support.
Development of new drug therapies and diagnostic tests
to the point where they can be made sufficiently widely
available to benefit human health can sometimes only be
achieved with the involvement of the commercial sector.
We have asked whether such collaborations might
include his gift if appropriate?
We are now able through international co-operation to
work with approved collaborators worldwide to advance
medical research. We have asked him to consider giving
his approval to export tissue from his gift to approved
collaborators outside of the UK.
It is not possible to anticipate the advances there may
be in the field of Medical Research or Ethics. We know
that he is as committed as we are too using his gift as
wisely as possible to help future generations. We have
asked him to consider his gift being used in the future
for related research projects as approved by a Research
Ethics Committee.
Data collected by the study will only be analysed by
approved researchers. This study has been considered
by the Multi-centre Research Ethics Committee and
Local Research Ethics Committees
All the information collected by the study is completely
confidential and it is stored without personal details on
secure systems in compliance with the DPA 1998.
The brain tissue will be stored separately and securely,
the gift will be extremely valuable for research for the
foreseeable future. If the usage should come to an
end, any remaining part of the gift would be disposed
of with utmost respect.
If you would like any further information or have any
questions please contact:-
Mrs Linda Barnes
Research Nurse
CFAS Administrative Centre
01223 330311
Professor Sir John Grimley Evans
Oxford Healthy Ageing Project
01865 224 325
Professor Carol Brayne
Cambridgeshire Project for Later Life
01223 330311
Mrs Cherie McCracken
Alpha Study Liverpool
Gwynedd Project for Healthy Ageing
0151 706 4143
Professor James Lowe
Nottingham Health in Later Life study
0115 970 9269
Professor Ian McKeith
Newcastle Project for Health in Later Life
Brain Tissue Donation line 0191 222 3313
or look at our website: www.cfas.ac.uk/
Information for female donor's relatives/carers
MRC Cognitive Function and Ageing Study
|
Administrative Centre
Department of Public Health and Primary Care
Institute of Public Health
University of Cambridge
Forvie Site
Robinson Way
Cambridge CB2 2SR
Telephone: 01223 330311
Fax: 01223 330330
MRC CFAS STUDY
BRAIN TISSUE DONATION
INFORMATION FOR RELATIVES/CARERS
In the past we approached your family member/next of
kin to discuss the ageing process and the links with
diseases such as Alzheimer's. We asked if she would be
willing to consider brain donation when she died to further
help the research. This was carefully considered by your
family member/next of kin and agreed upon and she
signed a general document indicating her wishes.
Because of recent advances in Medical Research, the
Multi-Centre Research Ethics Committee requires us to
seek additional and more specific approval for the use of
your family member/next of kin's gift. Below are some of
the areas we have asked her to consider as suitable uses
for her gift.
Research involving genetic study may lead to the
discovery of genes that either predispose to, or protect
against disease. Use of the gift may include genetic
research aimed at understanding the genetic influences
on diseases related to ageing such as Alzheimer's. The
results of these investigations are unlikely to have any
implications for you or related individuals personally.
Information on the findings of such work will not be fed
back to families. Significant findings would need to be
confirmed in further research, but all the findings inform
policy in the National Health Service, this could result in
new screening and diagnostic tests available to
populations who would benefit, with appropriate clinical
and counselling support.
Development of new drug therapies and diagnostic tests
to the point where they can be made sufficiently widely
available to benefit human health can sometimes only be
achieved with the involvement of the commercial sector.
We have asked whether such collaborations might include
her gift if appropriate.
We are now able through international co-operation to
work with approved collaborators worldwide to advance
medical research. We have asked her to consider giving
her approval to export tissue from her gift to approved
collaborators outside of the UK.
It is not possible to anticipate the advances there may
be in the field of Medical Research or Ethics. We know
that she is as committed as we are to using her gift as
wisely as possible to help future generations. We have
asked her to consider her gift being used in the future for
related research projects as approved by a Research
Ethics Committee.
Data collected by the study will only be analysed by
approved researchers. This study has been considered
by the Multi-centre Research Ethics Committee and Local
Research Ethics Committees.
All the information collected by the study is completely
confidential and it is stored without personal details on
secure systems in compliance with the DPA 1998.
The brain tissue will be stored separately and securely,
the gift will be extremely valuable for research for the
foreseeable future. If the usage should come to an end,
any remaining part of the gift would be disposed of with
utmost respect.
If you would like any further information or have any
questions please contact:-
Mrs Linda Barnes
Research Nurse
CFAS Administrative Centre
01223 330311
Professor Sir John Grimley Evans
Oxford Healthy Ageing Project
01865 224 325
Professor Carol Brayne
Cambridgeshire Project for Later Life
01223 330311
Mrs Cherie McCracken
Alpha Study Liverpool
Gwynedd Project for Healthy Ageing
0151 706 4143
Professor James Lowe
Nottingham Health in Later Life study
0115 970 9269
Professor Ian McKeith
Newcastle Project for Health in Later Life
Brain Tissue Donation line 0191 222 3313
or look at our website: www.cfas.ac.uk/
- Research Information
-
Background
- Brief Introduction
- Research Themes
- Bolt-on Studies
- Glossary of Terms
CFAS I
- Design and Interview
- Study Protocol
- Scientific Strategy
CFAS II
- Study Protocol
CFAS Wales
- Introduction
Documentation
- Study Information
- Consent Forms
- Neuropathology Forms
- Questionnaires
Data
- Data & Analysis
- Liverpool Data
Oversight
- Advisory Committee
- Biological Resources
- Fundings
- Ethics & Legal Aspects
- Archive Documents
- Management Structure
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