Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: a proposed protocol

BMC Research Notes

Derek Pheby²  Erinna Bowman⁶  Alison Hall¹  Kirstin Goldring³  Djordje Gveric⁴  Eliana M Lacerda⁶  Dominic G O’Donovan⁵  Luis Nacul⁶ 

[1] PHG Foundation, 2 Wort’s Causeway, Cambridge CB1 8RN, UK;Faculty of Health and Society, Buckinghamshire New University, Uxbridge Campus, 106, Oxford Road, Uxbridge, Middlesex UB8 1NA, USA;UCL-RFH BioBank, Royal Free Hospital, 1st Floor, Rowland Hill Street, NW3 2PF Hampstead, UK;The UK Multiple Sclerosis and Parkinson’s Disease Tissue Banks, Hammersmith Campus, Imperial College, 160 Du Cane Road, W12 0NN London, UK;Department of Histopathology, Box 235 Level 5 John Bonnett Clincal Laboratories, Addenbrooke’s Hospital, Hills Road, CB1 0QQ Cambridge, UK;London School of Hygiene & Tropical Medicine, ITD/CRD/International Centre for Evidence in Disability, K/490, Keppel Street, WC1E 7HT London, UK

关键词: Tissue donors;    Tissue banks;    Participatory research;    Ethical issues;    ME/CFS;    Chronic fatigue syndrome;   

Others  :  1132469
DOI  :  10.1186/1756-0500-7-370

 received in 2013-10-02, accepted in 2014-06-02,  发布年份 2014

【 摘 要 】

Background

Our aim, having previously investigated through a qualitative study involving extensive discussions with experts and patients the issues involved in establishing and maintaining a disease specific brain and tissue bank for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was to develop a protocol for a UK ME/CFS repository of high quality human tissue from well characterised subjects with ME/CFS and controls suitable for a broad range of research applications. This would involve a specific donor program coupled with rapid tissue collection and processing, supplemented by comprehensive prospectively collected clinical, laboratory and self-assessment data from cases and controls.

Findings

We reviewed the operations of existing tissue banks from published literature and from their internal protocols and standard operating procedures (SOPs). On this basis, we developed the protocol presented here, which was designed to meet high technical and ethical standards and legal requirements and was based on recommendations of the MRC UK Brain Banks Network. The facility would be most efficient and cost-effective if incorporated into an existing tissue bank. Tissue collection would be rapid and follow robust protocols to ensure preservation sufficient for a wide range of research uses. A central tissue bank would have resources both for wide-scale donor recruitment and rapid response to donor death for prompt harvesting and processing of tissue.

Conclusion

An ME/CFS brain and tissue bank could be established using this protocol. Success would depend on careful consideration of logistic, technical, legal and ethical issues, continuous consultation with patients and the donor population, and a sustainable model of funding ideally involving research councils, health services, and patient charities. This initiative could revolutionise the understanding of this still poorly-understood disease and enhance development of diagnostic biomarkers and treatments.

【 授权许可】

   
2014 Nacul et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]World Health Organization: International Statistical Classification of Diseases and Related Health Problems 10th Revision. [http://apps.who.int/classifications/icd10/browse/2010/en webcite]
• [2]Cader S, O'Donovan DG, Shepherd C, Chaudhuri A: FP03-MO-02 Neuropathology of post-infectious chronic fatigue syndrome. J Neurol Sci 2009, 285:S60-S61.
• [3]Chaudhuri A, Behan PO: In vivo magnetic resonance spectroscopy in chronic fatigue syndrome. Prostaglandins Leukot Essent Fatty Acids 2004, 71:181-183.
• [4]Cook DB, O'Connor PJ, Lange G, Steffener J: Functional neuroimaging correlates of mental fatigue induced by cognition among chronic fatigue syndrome patients and controls. Neuroimage 2007, 36:108-122.
• [5]de Lange FP, Kalkman JS, Bleijenberg G, Hagoort P, van der Meer JW, Toni I: Gray matter volume reduction in the chronic fatigue syndrome. Neuroimage 2005, 26:777-781.
• [6]Kuratsune H, Yamaguti K, Lindh G, Evengard B, Hagberg G, Matsumura K, Iwase M, Onoe H, Takahashi M, Machii T, Kanakura Y, Kitani T, Langstrom B, Watanabe Y: Brain regions involved in fatigue sensation: reduced acetylcarnitine uptake into the brain. Neuroimage 2002, 17:1256-1265.
• [7]Lange G, DeLuca J, Maldjian JA, Lee H, Tiersky LA, Natelson BH: Brain MRI abnormalities exist in a subset of patients with chronic fatigue syndrome. J Neurol Sci 1999, 171:3-7.
• [8]Lange G, Steffener J, Cook DB, Bly BM, Christodoulou C, Liu WC, Deluca J, Natelson BH: Objective evidence of cognitive complaints in Chronic Fatigue Syndrome: a BOLD fMRI study of verbal working memory. Neuroimage 2005, 26:513-524.
• [9]Natelson BH, Cohen JM, Brassloff I, Lee HJ: A controlled study of brain magnetic resonance imaging in patients with the chronic fatigue syndrome. J Neurol Sci 1993, 120:213-217.
• [10]Okada T, Tanaka M, Kuratsune H, Watanabe Y, Sadato N: Mechanisms underlying fatigue: a voxel-based morphometric study of chronic fatigue syndrome. BMC Neurol 2004, 4:14.
• [11]Sherlin L, Budzynski T, Kogan Budzynski H, Congedo M, Fischer ME, Buchwald D: Low-resolution electromagnetic brain tomography (LORETA) of monozygotic twins discordant for chronic fatigue syndrome. Neuroimage 2007, 34:1438-1442.
• [12]Brenu EW, van Driel ML, Staines DR, Ashton KJ, Ramos SB, Keane J, Klimas NG, Marshall-Gradisnik SM: Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. J Transl Med 2011, 9:81.
• [13]Broderick G, Fuite J, Kreitz A, Vernon SD, Klimas N, Fletcher MA: A formal analysis of cytokine networks in chronic fatigue syndrome. Brain Behav Immun 2010, 24:1209-1217.
• [14]Capelli E, Zola R, Lorusso L, Venturini L, Sardi F, Ricevuti G: Chronic fatigue syndrome/myalgic encephalomyelitis: an update. Int J Immunopathol Pharmacol 2010, 23:981-989.
• [15]Lorusso L, Mikhaylova SV, Capelli E, Ferrari D, Ngonga GK, Ricevuti G: Immunological aspects of chronic fatigue syndrome. Autoimmun Rev 2009, 8:287-291.
• [16]Morrison LJ, Behan WH, Behan PO: Changes in natural killer cell phenotype in patients with post-viral fatigue syndrome. Clin Exp Immunol 1991, 83:441-446.
• [17]Tanaka S, Kuratsune H, Hidaka Y, Hakariya Y, Tatsumi KI, Takano T, Kanakura Y, Amino N: Autoantibodies against muscarinic cholinergic receptor in chronic fatigue syndrome. Int J Mol Med 2003, 12:225-230.
• [18]Carruthers B, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles AP, Sherkey JA, van de Sande MI: Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. Journal of chronic fatigue syndrome 2003, 11:7-115.
• [19]Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A: The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994, 121:953-959.
• [20]Martin WJ: Severe Stealth Virus Encephalopathy following Chronic-Fatigue-Syndrome-Like Illness: Clinical and Histopathological Features. Pathobiology 1996, 64:1-8.
• [21]Richardson J: Viral isolation from brain in myalgic enchephalomielitis (a case report). Journal of Chronic Fatigue Syndrome 2001, 9:15-19.
• [22]Hunter C: Autopsy Protocols/Tissue Bank for ME/CFS. [http://www.co-cure.org/hmc041607.htm#4 webcite]
• [23]Robotham J: Victims give clues to the answers. [http://www.smh.com.au/news/science/victims-give-clues-to-the-answers/2007/04/11/1175971183260.html webcite]
• [24]United States General Accounting Office - GAO: Chronic fatigue syndrome - CDC and NIH research activities are diverse, but agency coordination is limited. [http://www.gao.gov/new.items/he00098.pdf webcite]
• [25]Beach TG, Sue LI, Walker DG, Roher AE, Lue L, Vedders L, Connor DJ, Sabbagh MN, Rogers J: The Sun Health Research Institute Brain Donation Program: description and experience, 1987-2007. Cell Tissue Bank 2008, 9:229-245.
• [26]Lacerda EM, Nacul L, Pheby D, Shepherd C, Spencer P: Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS. J Clin Pathol 2010, 63:1032-1034.
• [27]Medical Research Council: The UK Brain Banks Network - brain banking in the UK. [http://webarchive.nationalarchives.gov.uk/20130704100126/http://mrc.ac.uk/Ourresearch/Resourceservices/UKBrainBanksnetwork/index.htm webcite]
• [28]United Kingdom Parliament: Human Tissue Act 2004. [http://www.legislation.gov.uk/ukpga/2004/30/notes/division/5/2/4/1 webcite]
• [29]Dawson T, Llewellyn L, Thomas C, Neal J: Neuropathology techniques. Oxford: Hodder Arnold; 2003.
• [30]Chirgwin JM, Przybyla AE, MacDonald RJ, Rutter WJ: Isolation of biologically active ribonucleic acid from sources enriched in ribonuclease. Biochemistry 1979, 18:5294-5299.
• [31]Vonsattel JP, Aizawa H, Ge P, DiFiglia M, McKee AC, MacDonald M, Gusella JF, Landwehrmeyer GB, Bird ED, Richardson EP Jr, Hedley-Whyte ET: An improved approach to prepare human brains for research. J Neuropathol Exp Neurol 1995, 54:42-56.
• [32]Vonsattel JPG, Amaya MDP, Cortes EP, Mancevska K, Keller CE: Twenty-first century brain banking: Practical prerequisites and lessons from the past: the experience of New York Brain Bank, Taub Institute, Columbia University. Cell and Tissue Banking 2008, 9:247-258.
• [33]Connolly T, Begg C: Database systems: a practical approach to design, implementation and management. 3rd edition. Harlow: Addison-Wesley; 2001.
• [34]Department of Health: The Cambridge brain bank. [http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/browsable/DH_4889626 webcite]
• [35]Shepherd C, Chaudhuri A: ME/CFS/PVFS: An exploration of the key clinical issues. Gawcott, UK: ME Association; 2013.
• [36]O’Donovan D, Harrower T, Cader S, Findley L, Shepherd C, Chaudhuri A: Pathology of Chronic Fatigue Syndrome: Pilot Study of four autopsy cases. In International Science Symposium 3-4 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Queensland, Australia: Population Health and Neuroimmunology Unit, Bond University; 2010.
• [37]Mathew SJ, Mao X, Keegan KA, Levine SM, Smith EL, Heier LA, Otcheretko V, Coplan JD, Shungu DC: Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study. NMR Biomed 2009, 22:251-258.
• [38]Chaudhuri A, Watson WS, Pearn J, Behan PO: The symptoms of chronic fatigue syndrome are related to abnormal ion channel function. Med Hypotheses 2000, 54:59-63.
• [39]Keenan PA: Brain MRI abnormalities exist in chronic fatigue syndrome. J Neurol Sci 1999, 171:1-2.
• [40]Friedberg F, Dechene L, McKenzie MJ 2nd, Fontanetta R: Symptom patterns in long-duration chronic fatigue syndrome. J Psychosom Res 2000, 48:59-68.