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Rare disease research: grey literature is the new knowledge currency

Posted on March 27th, 2020 by in Pharma R&D

Pharma research for rare disease is challenging because of insufficient patient populations available for clinical trials, and also because the investment returns are marginal. Thus, grey literature is an important source of information for rare disease research—and, fortunately, grey literature data is increasingly being recognized as highly valuable to the scientific community.

Understanding grey literature and where to find it

Unlike the scholarly literature published in peer-reviewed journals that drives so much scientific research, grey literature gets its name from the fact that it tends to be a less formal and organized source of scientific knowledge. It has many advantages in that it can provide researchers with difficult-to-find information, current knowledge of competitor activity, and it can help them stay up-to-date on the very latest advancements.  

Some common sources of grey literature can include information in government databases, reports from professional societies and non-profits, white papers, doctoral theses, newsletters, blogs, and conference proceedings and abstracts. Conference proceedings have become an especially impactful form of grey literature, often included in systematic literature reviews.

While grey literature opens up many possibilities for researchers, and is especially exciting for those in rare disease research who have found scholarly literature sometimes lacking, the challenge is: Where do you find grey literature? For conference proceedings and abstracts in particular, there are some biomedical databases that index them, such as SciFinder, Web of Science, and Embase.

Embase includes conference abstracts from important biomedical, drug and medical device conferences dating back to 2009. These abstracts, which represent the entire record (i.e. there is no full-length article with additional content), are indexed using Elsevier’s Life Science thesaurus Embase Indexing and Emtree, making the search and retrieval easier and standardized for identifying relevant information.

Retrieve the latest conference literature using Embase

To search for conference content in Embase, one can perform a ‘quick search’ with the conference name field, for example American Academy of Allergy, Asthma & Immunology (AAAAI) annual meeting. In Embase, this conference has abstracts published since 2009. The most recent conference abstracts for 2020 were published in the Journal of Allergy and Clinical Immunology, vol. 145 no. 2, and have been available in since 11th February 2020. These can be obtained by filtering the publication years for 2020. The source filter shows that conference abstracts are the unique content of Embase and are not indexed in MEDLINE. Using the export functionality of the disease filter the disease focus of AAAAI annual meeting 2020 can also be determined.

Disease focus in AAAAI 2020: Top 15 diseases based on number of abstracts

The theme for this year’s meeting, which was originally expected to be held from March 13-16 but canceled due to COVID-19, was ‘New paradigms in the management of allergic diseases’ with the focus on Biologics. One such biologic drug is Berotralstat (BCX7353), which is indicated to be used for the prevention and treatment of a rare disease called hereditary angioedema. It is an oral inhibitor of plasma kallikrein and is still in development. Angioneurotic edema is rare (1/100,000 births/inhabitants in France for the hereditary form) but potentially severe disease (risk of fatal laryngeal edema). It is a relapsing subcutaneous or submucosal edema caused by a deficiency in C1Inh (inhibitor of the C1 fraction of complement).

Bernstein et al. have performed clinical trial studies for patients with Hereditary Angioedema with four conference proceedings published in the recent AAAAI 2020. In three of the articles, ‘Berotralstat’ is studied, indicating that the daily oral dose of this drug reduces the rate and severity of Hereditary Angioedema, also this drug’s adverse effects are predominantly mild, self-limited, and most frequent in the first three months of treatment. Learn more about author Jonathan A. Bernstein here.

Embase helps heighten the detection of difficult to find ‘grey literature’ through its conference indexing and thus makes it easy to find information on biomedical literature for rare diseases. It currently indexes 11,500+ conferences covering over 3.6 million conference abstracts-advanced information. Since 2009, Embase has covered conference abstracts published primarily in journal supplements.

To learn more about Embase and how it empowers biomedical researchers, click here.

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