Working with the Medicines Industry

1. Introduction
This statement covers arrangements for the Tuberous Sclerosis Association (TSA) working and interacting with the pharmaceutical and biotechnology organisations and covers all activities related to:

• Research and development 
• Sponsorship of events, awards and publications 
• Public affairs and campaigning

The TSA will at all times fully meet the requirements of the Charity Commission and, where appropriate, those of the Office of the Scottish Charity Regulator (OSCR).

2. Equality
The TSA will not enter into any relationship designed specifically to give one company competitive advantage over another. References in the TSA’s publications or information services to a particular product by generic or trade name do not constitute recommendation of the product or service.

3. Openness and Transparency
The TSA will report collaborations and financial contributions received from industry in our financial report and accounts. When consulting industry regarding any aspects of research, discussions will be covered by confidentiality agreements. The TSA will state that it has received industry support on publicity and other materials associated with a particular programme.

4. Independence and Impartiality
Before seeking financial contributions from industry, the TSA will ensure it has a thorough understanding of the company. Where financial support is offered, the TSA will seek to be clear about the company’s expectations, ensuring that these are in line with the TSA’s charitable objects.  The TSA’s logo and any of its materials may not be used by any industry partner without our written agreement and the TSA will maintain editorial control over the content.

5. Research
Any direct collaboration with industry or direct funding of a project that is carried out by industry will be subject to a clear agreement and terms and conditions that will identify requirements and expectations, particularly around intellectual property, publications and exploitation. Any collaboration must clearly support the TSA’s strategic aims and objectives, promote the work of the TSA and accord with the TSA’s values. The TSA will ensure that the agreement complies with the terms contained within the ABPI Code of Practice. In particular, companies must not use the partnership to directly or indirectly advertise its products or services to individuals.

6. Sponsorship
The TSA welcomes financial or other material support from the medicines industry.  Sponsorship by companies may enable the TSA to fund scientific meetings or events for patients or supporters, patient information leaflets or other educational materials. If a company does offer financial support, the Society will seek to be clear about the company’s expectations and ensure that these are in line with the TSA’s charitable objects. The acceptance of sponsorship will be confirmed by a written agreement.

7. Patient involvement in clinical trials
The TSA recognises the importance of clinical trials and will make available information on clinical trials for the purpose of bringing them to the attention of people with TSC. The provision of information in this manner will not constitute a recommendation to take part in a clinical trial. Arrangements for the provision of information relating to clinical trials through the TSA will be subject, without exception, to written agreement.

8. Campaigning and lobbying
Where the TSA becomes involved with a collaborative lobbying campaign the terms of the collaboration will be governed by a written agreement between the involved parties.

Where working with a party that may be funded or otherwise linked to industry we will seek to ensure that we are aware of any such links and that our collaborators are open and transparent about their existence. The TSA reserves the absolute right to make public comment based on its impartial view of the evidence and data relating to treatments and services.

Tuberous Sclerosis Association March 2012