From the December 2012 newsletter of the International Association of CFS/ME (words by Linda Paulson).
Two new ME/CFS research biobanks have been established this year. One is run by Linda Paulson, PhD, and is located at the ME/CFS-centre at the Oslo University Hospital in Oslo, Norway. The other one is coordinated by Eliana M Lacerda, PhD, within ME/CFS Research Project, at the London School of Hygiene & Tropical Medicine, London, England.
The two biobanks are collaborating with each other, by implementing similar protocols, which will enable the use of samples from both facilities by bona-fide researchers.
One important feature of these facilities is the definition of cases – which in both biobanks are defined by the compliance with the CDC-94 or the Canadian Criteria. This may help researchers to improve sub grouping, and to look further at the possibility of distinct phenotypes.
Another is to have a similar set of clinical and laboratorial measures of participants (cases and controls), which can also be made available to future researches, and that may contribute to elucidate questions related to risk factors, clinical presentations and clinical correlations with laboratory measured abnormalities.
The similar laboratory protocols, implemented for collecting blood samples, provide a number of cryopreserved aliquots of blood derivatives that can be used by diverse types of immunological, virological and gene expression researches.
The Norwegian biobank will include 300 patients and 300 controls a year. The collected specimen provides samples of serum, plasma, plasma for proteins studies, extracted DNA, extracted RNA, (incl. microRNA), PBMC (peripheral blood mononuclear cells), urine, saliva, whole blood (EDTA), EDTA blood for DNA extraction, and blood for RNA extraction.
The data available for cases contains demographics, case definitions, symptom inventories and medical and psychiatric exclusions and co-morbidities. In addition, a wide array of other health information such as treatments, coping, social and work related issues as well as physical, psychological and social functioning, will be part of the register.
The UK biobank initially includes 75 patients and 35 controls a year, providing samples of serum, plasma, PBMCs (peripheral blood mononuclear cells), whole blood (EDTA), RBC/Granulocyte pellet for DNA extraction, and blood for RNA extraction.
Their database contains anonymised information on cases and controls, that can be linked to the biosamples on request. This includes compliance with specific cases definitions (for cases), and similar data as described above.
Such collaboration has the potential to enormously enhance cost-benefits of these types of research projects. Both biobanks already have national and international collaborations with quality team of top researchers, and are opened to extend their collaboration to interested research teams.
Please contact us for further information.
MEA note: The London bio-bank is co-funded by the ME Association, Action for ME, ME Research UK and a private donor, who wishes to remain anonymous.