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Text of the Support Workers Talk

Why donate your brain to the Parkinson's Disease Society (PDS) Tissue Bank?

Introduction

  • Background of the Tissue Bank
  • Aims and Objectives of the Tissue Bank
  • Reasons why it is important to donate?
  • Who can donate?
  • What is involved in registering to be a donor?
  • What is involved in donation procedure?
  • How will the tissue be used?
  • PD research
  • Donor statistics to date
  • What happens if you want to donate? - Contact details

Background of the Tissue Bank

Expert review committee of the Parkinson's Disease Society (PDS) moved its Brain Tissue Research Centre from the Institute of Neurology to Imperial College in January 2002.

  • Bring together scientists researching PD, neurologists, neuro-pathologists
  • Imperial college already housed tissue collections including the Multiple Sclerosis Tissue Bank

Letter sent from the PDS to all existing tissue donors explaining the changes.

New set of consent forms

Aim of the Tissue Bank

Develop a framework allowing successful interactions between:

  • People with Parkinson's disease
  • Parkinson's Disease Society
  • Relatives and carers
  • Residential Homes
  • General Practitioners
  • Neurologists
  • Neuropathologists
  • Scientists Researching into Parkinson's Disease

Objectives of the Tissue Bank

To obtain and distribute High Quality human brain tissue, for research into PD and related disorders both in the UK and worldwide.

  • Recruitment into donor scheme
  • Collection of patient data, family histories, epidemiological details
  • Collection, processing and storage of human tissue
  • Distribution of tissue to scientists
  • Raise public awareness, links with international PD research and interest groups
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Why do we need a PD Tissue Bank?

HUMAN Brain Tissue is VITALLY IMPORTANT for ongoing progress into the understanding and treatment of neurological disorders such as Parkinson's Disease.

  • Why human?
    • Animals don't get PD, hence donated tissue is essential for examining the mechanisms of cell death, pathological changes etc.
    • Complement some animal work and tissue culture studies, and provide confirmation of these studies
  • Past research:
    • Drug development - L-DOPA
    • Some understanding of mechanisms of cell death

Who can donate tissue?

Anyone!

  • Parkinson's Disease
  • 'Parkinson's plus' movement disorders:
    • Multiple System Atrophy (MSA)
    • Progressive Supranuclear Palsy (PSP)
  • Controls – very important

With Human tissue there is always a great demand!

What is involved in registering to be a donor?

  • follow government guidelines for tissue donation
  • information pack
  • donor consent
  • next of kin consent form
  • GP copy of forms
  • Historical data on lifestyle and family

Information stored about our donors

  • Request for information
    • name and address
  • Donor information obtained:
    • donor consent form
    • next of kin consent form
    • historical data on lifestyle and family
  • After death
    • clinical/medical notes

What is involved in the donation procedure?

Rapid collection of tissue is important (Aim - 24 hours)

  1. Death of registered donor
  2. Next of kin calls PDS Tissue Bank 24 hour emergency telephone number
  3. PDS Tissue bank immediately calls for further details
  4. Deceased transported to nearby hospital for tissue removal
  5. Body returned to funeral directors
  6. Tissue collected and stored at Charing Cross Hospital
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What happens when a donor dies?

  • 24 hour on call rota
  • Make arrangements –
    • Post Mortem Delay?
    • Fixed or Fresh tissue? (Majority Fresh)
  • 2 ways of processing

What will happen to my brain once donated?

The brain is cut into two halves, one of which is fixed. The other half is cut into thick sections and rapidly frozen.

For the fixed half, tissue blocks from various brain regions are cut. Tissue sections from such blocks are subjected to a variety of histological stains. A neuropathologist examines the sections to confirm that the donor had a specific neurological disease or was free from any neurological disorder.

Once the neuropathological diagnosis has been confirmed, the frozen tissue slices dissected and utilised for the various research projects.

"Looking at post-mortem brain tissue is like looking at the scene of a crime. You are trying to gather evidence to find out what has happened!"

Tour of Tissue Bank

  • Laboratory for brain dissection

    1. Dissection and cryopreservation of fresh tissue

      1. Fresh tissue (brain and, where possible, spinal cord) received

      2. Brain photographed and cut in half

      3. Half taken for preservation in fixative (see below)

      4. Remaining tissue cut into 1cm thick anterior and posterior slices

      5. Slices photographed

      6. Slices cut into blocks and re-photographed

      7. Tissue blocks snap-frozen in isopentane

      8. Blocks logged and stored in the freezer (-85oC)

    2. Dissection and cryopreservation of fixed tissue

      1. Several weeks in fixative solution

      2. Cut into slices, photographed and examined by a neuropathologist

      3. Specific blocks removed for analysis (see number 3)

      4. Remaining tissue cut into blocks and re-photographed

      5. Blocks snap-frozen in isopentane

      6. Tissue logged and stored in the freezer (-85oC)

  • Freezer room

  • Histology laboratory - processing and analysis of selected fixed tissue blocks

    1. Tissue processor - blocks infiltrated with paraffin

    2. Embedding machine - infiltrated blocks embedded in paraffin

    3. Paraffin blocks cut into thin sections, which are then transferred to microscope slides

    4. Tissue sections stained using various standard and specific methods as necessary

    5. Staining analysed

    6. Report produced

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Progress of the new Tissue Bank

  • Number of donors on the database and information set out to possible donors – going well but need to increase
  • Designed a new information sheet
  • New donor cards sent out to registered donors
  • Databases
  • Laboratory up and running
  • Website – www.parkinsonstissuebank.org.uk
  • New Logo

Statistics of the PDS Tissue Bank donors

  • Number of enquiries/ request for information
  • Number of donors registering
  • Donor Distribution

Donor Statistics

  Pre-July To Date
Requests for information
(Packs sent)
272 1555

Donor Statistics

  Pre-July Total To Date On system
(Current)
Total number of donors registered 139 954(366) 774(353)

Donor Statistics

Percentage of registered prospective donors:

  • PD - 54%
  • Control - 46%

Donor Statistics

  Number of donors Number of Males Number of Females Number of Males with PD Number of Females with PD Number of Males without PD Number of Females without PD
Registered/ Prospective 774 321 453 220 201 101 252
Cases 151(+29) 102(+13) 49(+16) 97(+13) 45(+12) 5 4(+4)
Total 954 436 518 330 258 106 260

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Procurement of Tissue

Case percentage:

  • PD - 94%
  • Control - 4%
  • Disease control - 2%

Clinical Review

Diagnoses (PD1-46, 48, 53-56)

  • PD - 47/51 (92%)
  • MSA - 3/51 (6%)
  • Dementia - 1/51 (2%)

Clinical Review

Donors

  • Mean Age at Onset: 65 (32-85)
  • Mean Age at Death: 77 (42-93)
  • Mean Duration of Illness: 12 (2-43)
  • Female: Male (28%: 72%)

Clinical Review

Mode of Presentation

  • Tremor - 66%
  • Drooling - 11%
  • Gait-balance - 28%
  • Akinetic-Rigid - 48%
  • Cognitive dysfunction - 3%
  • Autonomic - 5%

Clinical Review

History I

  • Non-(never/reformed) smokers 46/51 (90%) (For 2 donors status unknown)
  • Active smokers 3/51 (6%) (All with atypical features & ?Cerebrovascular Parkinsonism)
  • Positive Family History 7/51 (14%)
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Clinical Review

History II

  • Neuroleptic exposure 6/51 (12%)
  • PD8: Methanol/Formaldehyde exposure
  • PD15: Crop Spraying exposure
  • Dyskinesia 22/51 (43%)

How will the tissue be used?

  • Requests for tissue from recognised Institutions both in the UK and around the world.
  • The project is reviewed by an independent scientific panel, to check whether the project is scientifically sound and will benefit medical research.
  • Written report on the research carried out by the research team.
  • Acknowledgement of the Tissue Bank and PDS in any scientific publication where donated tissue has been used.

What are the aims for PD Research?

  • Understand how and why cell death occurs in PD
  • Develop better treatments in PD and related diseases
  • Predict and identify possible susceptibility to PD
  • Disease prevention

PD Research being carried out at Imperial

Dr David Dexter - Mechanisms of Neuronal death

  • Accumulation of Fe in the PD Substantia nigra – Stimulation of free radicals.
  • Increased free radical damage to lipids and other cellular components.
  • Deficiency of the bodies defence systems against free radicals – antioxidants.
  • Studies with Vitamin E and C
  • Are they the best anti oxidants to use? – Flavonoids
  • Flavonoids - Found in many fruits, vegetables, seeds, grain, tea & wine. Also anti-inflammatory

Dr David Dexter - What has sex got to do with Parkinson’s Disease

  • Epidemiology studies reveal that women are less likely to develop PD!
  • Pre-menopausal women with PD experience clinical fluctuation to drugs during the estrous cycle.
  • Removal of hormone replacement therapy in post-menopausal women worsens PD!
  • Is estrogen neuroprotectory?

Professor Manuel Graeber – Gene Expression analysis

  • 33,000 genes to look at!
  • Concentrate on the genes responsible for the mechanisms of cell death that we have identified so far e.g. oxidative stress.
  • Once we have identified genes that are either up or down regulated we will look at their expression at the cellular level i.e. does it occur in neurones, glia etc
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Tissue Bank – Publicity (1)

  • Branch Talks (some with press coverage) –
    Bath, Worthing, Aberystwyth, Barnet, Horsham, Sevenoaks, North Herts/Stevenage, Croydon, Northampton, Cheltenham, Doncaster, Brentwood, Lincoln, Rugby, Christchurch, Leicester, Poole, Beccles, Byfleet, Malmesbury, Bradford, Dumfries, Oldham, Halifax, Worcester, Newbury, Longeaton, Bracknell, Portsmouth, Ashford, Stevenage (YAPP&Rs), NW Branches, South Anglia, Plymouth, Southampton, Dundee, Greenwich, Peterborough, Barking, Harlow, Hitchin, Lewisham, Oxford, Hampshire (YAPP&Rs), Basingstoke, Southend, Haltwhistle, Penrith, Welwyn and Hatfield, Guildford, Dartford, Amersham, Liverpool, Sutton, Kingston and Epsom, Hillingdon, Lincoln, Hull, York, Derby, Farnborough, Minehead, NW Somerset, Southport, Maidenhead, Barnsley, West Midlands, Stockport, Sandwell, Canterbury, Eastbourne, Cirencester, Bristol, Harrogate, Beccles, Cardiff, Newport, Aberdeen, Chichester, Reigate, Leamington, Bridport, West Herts.

  • PDS AGM 2001, 2002, 2004 and 2005. YAPP&R’s AGM 2005.

  • Scottish Branches meeting in Stirling.

  • Northern Ireland Branches Meeting in Cookstown.

  • BA Festival of Science, Dublin September 2005

Tissue Bank – Publicity (2)

  • Meeting of PD nurse specialists in Nottingham. Community and support workers – Reading 2004, Kensington 2004

  • Donate for the future article – "Parkinson" Magazine.

  • SPRING conference – 11th March 2003

  • Brain Awareness Week – 10th-14th March 2003

  • PD nurse visit arranged by GSK – 25th March and 4th Nov 2003, 9th Jan and 13th Feb 2004, 18th November 2005

  • Tissue Bank open day – 28th March 2003, 16th April 2004, 11th April 2005

  • Article for Working With Older People – June 2003

  • Articles in YapMag – August 2003, Winter 2003

  • Articles in Branch literature – Worcester, Lewisham, North Herts (YAPP&Rs), Mid Somerset, North London, Guildford, Hillingdon, Taunton, Dorset (YAPP&RS)

  • First Newsletter Out September 2003, Second April 2004, Third September 2004, Fourth April 2005, Fifth September 2005

  • Sixth newsletter Out Now!!!

Donate for the Future

"DONATION OF YOUR BRAIN IS ONE OF THE MOST IMPORTANT LEGACIES YOU CAN MAKE TO THE ADVANCEMENT OF RESEARCH INTO PARKINSON’S DISEASE AND OTHER NEUROLOGICAL DISORDERS!"

Contact Details

UK Parkinson's Disease Society Tissue Bank at Imperial College
Division of Neuroscience & Psychological Medicine, Imperial College of Science Technology & Medicine, Faculty of Medicine, Charing Cross Campus, Fulham Palace Road, London W6 8RF
Tel: (Int +44-20) 020-8383-4917, Fax: (Int +44-20) 020-8383-4918
Email: pdbank@imperial.ac.uk
Website: www.parkinsonstissuebank.org.uk/

Contact us and we will send you an information pack

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