Funding resources for rare disease research

Research is an expensive venture requiring multiple sources of funding for small projects that test new theories, large projects to make major advancements, training the next generation of researchers and facilitating meetings to share findings and support collaboration. For rare conditions, such as Batten disease, research funds can be difficult to find.To see how investigators supported their work in the past, we did a key word search of the Acknowledgement Section of peer-reviewed literature published in Batten disease in the last 6.5 years. Interestingly, we discovered 193 separate funding sources. The authors hope that, by showing where funds are available, we will enable Batten disease researchers to continue their pursuits and expand their studies; moving key findings from discovery to application phases. This article is part of a Special Issue entitled: The Neuronal Ceroid Lipofuscinoses or Batten Disease.     

Raising the social yield of research: challenge facing biotechnology.

The biological revolution is the latest in a series of scientific revolutions that have ushered in a new era in physics, chemistry, industry, and composite materials. The latest instruments of life - bioengineering for and by the living - challenge mankind with a number of fundamental questions, while offering an unprecedented series of opportunities. Alternative biotechnologies, biological agriculture for the environment, genomics applied to preventive medicine, genetic engineering are just a few of the benefits mankind may reap from bioengineering. Modern society demands more knowledge, and it is up to public authorities to invest in outreach programs to make public the latest scientific activities and findings. In the case of biotechnologies, it is particularly true that the product of research is not complete until its benefits are returned to society.     

Cadaveric tissue retrieval service for research: one-year review and options for the future

The Tissue Acquisition Unit at Peterborough has an established service for collecting cadaveric human tissue for research. A one-year, on-going, in-house review was undertaken to evaluate the cost- and time-effectiveness of the service. The review identified referrals that failed to result in post mortem tissue retrieval. Only 28.6% of potential donors referred to the Unit led to successful tissue retrieval and the main reason for failure was post mortem time delay in some cases related to distance of location of the body from the Unit. The evolving novel role of the Pathology Liaison Nurses in the Unit is expected to increase the proportion of tissue acquisition from the local population and provide a more efficient service for donors and their families and researchers who use human tissue. This work was presented at the BATB Annual Scientific meeting in Edinburgh, April 2004.