Launching a new open access journal – a challenging start but a bright future

By Tiina Urv and Samantha Taylor

An unexpected start

No one could have known when Therapeutic Advances in Rare Disease was launched on Rare Disease Day (February 28th) 2020 that we would soon be plunged into a global pandemic the likes of which had not been seen for a century. It was a challenging time at all levels, personal, family, community, national, and global. It has had a significant impact on the lives of many individuals with rare disease and their ability to gain access to services and treatment. The ability to conduct research studies was also slowed, raising concerns among patients and caregivers as to how this would impact ongoing studies related to the advancement of therapeutics for rare diseases. Note that we said it “slowed” not stopped. The research community was driven to think “outside of the box” to enable them to conduct their studies using modified and novel approaches. We would like to take a moment to applaud the rare diseases research community for their commitment, tenacity, and ingenuity in keeping science moving forward during these challenging times.

There were many times when, perhaps more sensible individuals, would have put this project on hold but we decided to push on considering our comments above. We felt that our new Journal had the potential to make a real difference to the rare disease community and who knew how long the pandemic was going to last!?!

Although most journals target a specific disease, organ, system, or age group, Therapeutic Advances in Rare Disease has the potential to touch on over 10,000 diseases, that can affect multiple organs, systems, or age groups. In rare disease research, it is important that we are open to identifying commonalities across disorders, whether it is a common pathway, an innovative research design or a treatment that has the potential to benefit multiple disorders. Therapeutic Advances in Rare Disease launched as a peer-reviewed, gold open-access journal that provides a unique opportunity for our readers to be exposed to studies that may be within their area of research, as well as areas with which may be less familiar but may provide important insights that can translate into their own fields.

Standing out in an already crowded room

The first challenge we identified was letting people know about our new Journal, specifically:

How were we going to reach a new audience?
How could we make ourselves stand out from the crowd in the new completely virtual world?

We committed, from the beginning, to supporting open science initiatives and strengthen the patient voice in academic journals as it is something we are both passionate about. We decided to do so by working with patient experts and patient groups to further validate research, publishing patient perspective articles and plain language summaries alongside articles to help increase the understanding of papers for non-specialists. By meeting the needs of the entire rare disease community we hoped this would help us stand out from the crowd.

We also wanted to provide opportunities for our next generation of rare disease researchers. We see them as our rising stars.  Early career researchers are often overlooked by publishers due to lack of experience but how can they gain experience without being given a chance to learn? We set up our Rising Stars in Rare Disease panel to support this goal and help us to guide future rare disease researchers providing them with resources on how to peer review papers and what publishers are looking for when papers are submitted.

To complement our patient and early career researcher editorial board panels we also recruited a team of world-renowned Associate Editors and a highly regarded international Editorial Board, who bring a wealth of experience and knowledge to guarantee the highest standards of publication. The aim of Therapeutic Advances in Rare Disease is to publish high-quality editorials, reviews, and rigorous original research articles relating to the innovative development of treatments for rare disease patients. Our goal is to be the first choice for the prompt publication of results from rigorous, well-designed clinical studies. In this context, we also decided to encourage the reporting of preliminary data as well as negative clinical studies. In addition, we publish observational studies and basic research with clinical relevance.

We would usually use conference attendance to help us promote a new Journal to a research community but in this instance all conferences were cancelled or held virtually which was another curveball to deal with. We therefore decided to set up a Twitter account to help us to disseminate research in this totally virtual world. Social media obviously has its pros and cons but we feel this has helped us to reach a wider audience and make our research more accessible for the whole rare disease community. 

Where are you indexed? Catch 22!

The question dreaded by anyone launching a new Journal – the answer nowhere!

Indexing is a real challenge when launching a new Journal. You can’t submit your application for indexing until you reach certain criteria and milestones and for a new Journal to reach these milestones without support from authors and reviewers it is impossible. But, rightly so, authors want to know their papers are going to be accessible to a wide network of their peers through indexing databases such as PubMed, Web of Science and Scopus – the vicious circle. No one wants to submit their paper to you because you are not indexed in major databases, but major databases won’t accept you without publishing papers!

The solution? Hard work! We both worked tirelessly with our Associate Editors and Editorial Board members to attract high quality papers to the Journal and publish enough papers to allow us to apply for indexing. As a result, we are pleased to announce we have recently been accepted into PubMed Central (PMC) the first big milestone for the Journal!

We won’t lie, the first few years of a Journal launch can be tough and with the added challenges the pandemic brought it was hard, but we are glad we persevered. We are grateful for the continued support of our readers, as well as to our authors and reviewers who supported us through the challenges of the first few years. It is an exciting and hopeful time to be working in the field of rare disease research and we very much look forward to submissions that will help drive the field of rare disease therapeutics forward.

More rare disease research from SAGE

Take a look at our rare disease microsite showcasing free to read, rare disease articles published across a range of Sage Journals.

Sage also publishes Rare Tumors – a peer-reviewed, open access journal, which focuses on the study, diagnosis and treatment of rare cancers.

About the Authors