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FOR THE
ENDED
31/07/2018
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TRUSTEES' REPORT |
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The trustees present their report and accounts for the
year
ended
31/07/2018
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OBJECTIVE AND ACTIVITIES |
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The principal activity of the charity in the Year under review was the advancement of health and the saving of lives for the public benefit in particular but not exclusively by:
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1) decreasing the burden of disease and improving diagnosis, treatment, and surveillance for those suffering from diseases with a genetic component in any part of the world by advancing the availability of and accessibility to genomic variant information to both experts and the general public.
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2) promoting the responsible collection, curation, interpretation, and sharing of genomic variant information by researchers, clinicians, medical scientists, national health systems, international organisations and the public and contributing to the alleviation of human suffering.
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3) carrying out research in furtherance of the purpose, the useful results of which will be published for the public benefit.
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We hold several educational courses per year on various topics; hgvs nomenclature, variant prediction training courses etc. These courses are held mostly in low/ middle income countries, mostly to curators. The courses promote the general objectives of global variome (gv); accurate data curation, up to date nomenclature, suitable data storage etc.
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We have several working groups who are assigned to draft a specific set of guidelines/ recommendations. These are then published for the view of the general public. Eg. We currently have a working group that has two objectives: prepare a set of gv guidelines on the reporting of sequence variants in journals, and draft a whitepaper for publication in a journal that speaks to these guidelines and proposes a sustainable path forward for journals to mandate the submission of sequence variants to the public database prior to publication.
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Regular meetings with international advisory committees to discuss project initiatives, maintain and expand our network around the world by providing guidance to others in initiating, developing, financing and operating their regional/nationaloperations of data/ knowledge sharing.
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The trustees have regarded the guidance issued by the charity commission on public benefit.
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Global variome has several international initiatives, which are described below. All have benefit to global healthcare.
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Successful educational courses - this year, several workshops have been held at academic conferences and diagnostic companies to educate and inform about the accurate use of genetic nomenclature for patient benefit.
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As a result of our various working groups, helpful guidelines/ recommendations have been published. These have been made freely available to public. Eg. We have received some excellent feedback from large diagnostic companies regarding our ethics checklist published early this year.
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FOR THE
ENDED
31/07/2018
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TRUSTEES' REPORT |
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http://www.humanvariomeproject.org/images/documents/hvp_-_ethical_data_management-_checklist_for_gene_disease_specific_database_curators__-_final.pdf
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The LOVD3 database has more variants than any of the other publically available variant databases , including clinvar and clingen. LOVD's purpose is to provide a flexible and freely available tool for gene collection and display of dna variants. LOVD is a gv recommended system and we strongly endorse/support its activities.
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LOVD is database that is used by experts on genetic variation to store and share information on genetic variants, phenotypes, genes and diseases. The software is open source and free of charge, operated by a team of volunteers.
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G2 (formally known as global globin 2020) is a specific project dedicated to fighting haemoglobinopathies (notably thalassaemias and sickle cell disease) in low- and middle-income countries by encouraging systematic collection and sharing of variation of data. Like most work related to gv, the main goals of G2 are; the growth of quality and quantity of curated inputs from low-middle income countries, harmonising the relevant shared variant data between countries and lastly the storage, curation and sharing of this data is sustainable for all. This project is gaining great traction with more money being invested (particularly from the Malaysian ministry of health) to create a portable device able to test blood and diagnose Thalassemia in remote locations in low/middle income countries. This device is already in the testing development phase.
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Much like G2, another project called the BRCA challenge aims to promote the responsible collection, curation, sharing and use of variation data to harmonise with existing databases. The BRCA challenge focuses on the genes that predispose for breast and ovarian cancer, particularly BRCA1 and BRCA2. The number of variants within the BRCA exchange database is rapidly increasing. The BRCA exchange has also recently released a mobile app in which clinicians/ healthcare professionals can look up a variant using their mobile phones making it much easier for them to diagnose and treat.
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We are currently launching a new international initiative aiming to develop a coordinated global network to deal with medical and health challenges of familial and inherited heart disease. This is called the global familial heart challenge. |
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STRUCTURE GOVERNANCE AND MANAGEMENT |
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The charity is a company limited by guarantee (company number 10269298) and is governed by its articles of association. The Trustees are the dire4ctors of the limited company.
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The directors may at any time appoint an individual to the board of directors to fill a vacancy or to increase the membership of the board.
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The retirement of a director appointed by the other directors does not contribute to the quota of directors.
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Charity name Global Variome
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Other name the charity uses The Human Variome Project (HVP)
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INDEPENDENT EXAMINER'S STATEMENT |
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FOR THE
YEAR
ENDED
31/07/2018
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INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF
GLOBAL VARIOME
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I report on the accounts of the company for the
year
ended
31/07/2018
.
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RESPECTIVE RESPONSIBILITIES OF TRUSTEES AND EXAMINER |
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The trustees (who are also the directors of the company for the purposes of company law) are responsible for the preparation of the accounts. The trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed.
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Having satisfied myself that the charity is not subject to an audit under company law and is eligible for independent examination, it is my responsibility to:
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- examine the accounts under section 145 of the 2011 Act;
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- follow the procedures laid down in the general Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act; and
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- state whether particular matters have come to my attention. |
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BASIS OF INDEPENDENT EXAMINERS STATEMENT |
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My examination was carried out in accordance with general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a "true and fair view" and the report is limited to those matters set out in the statement below. |
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INDEPENDENT EXAMINERS STATEMENT |
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In connection with my examination, no matter has come to my attention:
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(1) which gives me reasonable cause to believe that in any material respect the requirements:
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- to keep accounting records in accordance with section 386 of the Companies Act 2006; and
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- to prepare accounts which accord with the accounting records, comply with the accounting requirements of section 396 of the Companies Act 2006 and with the methods and principles of the Statement of Recommended Practice: Accounting and Reporting by Charities Regulations 2008
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have not been met. |
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................................................... |
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ACCOUNTANTS' REPORT TO THE BOARD OF DIRECTORS ON THE UNAUDITED ACCOUNTS |
OF GLOBAL VARIOME, FOR THE YEAR ENDED 31/07/2018 |
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In order to assist you to fulfill your duties under the Companies Act 2006,
we have prepared for your approval the accounts of Global Variome for the year ended
31/07/2018 as set out on pages - to
(1) from the company's accounting records and from
information and explanations you have given us. |
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As a practising member of the ICAEW, we are subject to
its ethical and other professional requirements which are detailed on their website. |
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This report is made solely to the Board of Directors of Global Variome,
as a body, in accordance with the terms of our engagement letter dated .
Our work has been undertaken solely to prepare for your approval the accounts of
Global Variome and state those matters that we have agreed to state to the Board of Directors
of Global Variome, as a body, in this report, in accordance with the requirements
of the ICAEW as detailed on their website. To the fullest extent permitted by law,
we do not accept or assume responsibility to anyone other than Global Variome and its Board
of Directors as a body for our work or for this report. |
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It is your duty to ensure that Global Variome has kept adequate accounting
records and to prepare statutory accounts that give a true and fair view of the assets,
liabilities, financial position and profitability of Global Variome. You consider that
Global Variome is exempt from the statutory audit requirement for the year. |
|
We have not been instructed to carry out an audit or a review of the
accounts of Global Variome. For this reason, we have not verified the accuracy or completeness
of the accounting records or information and explanations you have given to us and we do not,
therefore, express any opinion on the statutory accounts. |
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F.E.Laughlin Ltd t/a JC Accountants |
Chartered Accountants and Registered Auditors |
19 Norfolk Street |
Sunderland |
SR1 1EA |
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24/04/2019 |
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Statement of Financial Activities |
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for the year ended
31/07/2018
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2018 |
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2017 |
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Unrestricted funds |
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Restricted funds |
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Total |
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Total |
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£ |
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£ |
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£ |
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£ |
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Income |
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Income from generated funds |
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Donations and legacies |
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632 |
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- |
|
632 |
|
- |
Income from charitable activities |
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25,622 |
|
- |
|
25,622 |
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14,479 |
Total Income and endowments |
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26,254 |
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- |
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26,254 |
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14,479 |
Expenses |
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Costs of generating funds |
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Expenditure on Charitable activities |
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26,464 |
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- |
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26,464 |
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14,479 |
Total Expenses |
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26,464 |
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- |
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26,464 |
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14,479 |
Net gains on investments |
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Net Income |
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(210) |
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- |
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(210) |
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- |
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Gains/(losses) on revaluation of fixed assests |
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Net movement in funds: |
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Net income for the year |
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(210) |
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- |
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(210) |
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- |
Net funds carried forward |
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(210) |
|
- |
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(210) |
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- |
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This statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities |
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BALANCE SHEET AT 31/07/2018 |
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2018 |
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2017 |
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Notes |
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£ |
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£ |
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CURRENT ASSETS |
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Cash at bank and in hand |
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1,866 |
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6,223 |
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1,866 |
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6,223 |
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CREDITORS: Amounts falling due within one year |
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3 |
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2,077 |
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6,223 |
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NET CURRENT LIABILITIES |
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(211) |
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- |
TOTAL ASSETS LESS CURRENT LIABILITIES |
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(211) |
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- |
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CAPITAL AND RESERVES |
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Unrestricted funds |
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5 |
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General fund |
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(211) |
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- |
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(211) |
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- |
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For the year ending 31/07/2018 the company was entitled to exemption under section 477 of the Companies Act 2006 relating to small companies.
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The members have not required the company to obtain an audit in accordance with section 476 of the Companies Act 2006.
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The directors acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and the preparation of accounts.
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These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies regime.
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Approved by the board of trustees on
24/04/2019
and signed on their behalf by
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............................. |
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Prof Sir J Burn
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Trustee |
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Expenses |
for the year ended
31/07/2018
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2018 |
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2017 |
|
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£ |
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£ |
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Expenses |
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Costs of generating funds |
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Charitable Activities |
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THE ADVANCEMENT OF HEALTH AND THE SAVING OF LIVES FOR THE PUBLIC BENEFIT |
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Resources Expended Charitable Activities - subcontract costs |
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22,522 |
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8,500 |
Resources Expended Charitable Activities - website and email accounts |
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188 |
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- |
Resources Expended Charitable Activ - video conferencing |
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114 |
|
- |
Resources Expended Charitable Activities - bank charges |
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27 |
|
11 |
Resources Expended Charitable Activities -co house fees |
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13 |
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13 |
Resources Expended Charitable Activities - travel costs |
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- |
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5,955 |
Accountancy fees |
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3,600 |
|
- |
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26,464 |
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14,479 |
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26,464 |
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14,479 |
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