Share4Rare toolkit for patient advocacy


Publishing your research findings

Publishing your community-based research findings in peer-reviewed journals will increase their visibility and impact. Find here a useful article for those with limited experience in how to publish scientific articles (Bordeaux et al., 2007).

The article includes recommendations on how academic and community partners (in the case of Share4Rare, the patient community) can collaboratively write manuscripts describing their research. The following steps are recommended:

  • Identifying the aim of your article
  • Defining the target audience
  • Selecting the candidate journal
  • Check the members  of the Editorial Board
  • Follow manuscript format and reference style
  • Authorship and partnership criteria
  • Rules for the writing process responsibility for each section 
  • Guidance and support (from the more experienced authors) (Tone, citations, heavy editing)
  • Choosing the title
  • Writing the article 
  • Introduction, Methods, Results, and Conclusions
  • Writing the Abstract

Writing the article

Most authors plead for a structured format (e.g., Introduction, Methods, Results, and Conclusions) even if the journal does not require it.





Background information to support the topic

What was done in the area

Why the study is done and what research question will be answered

Cite only pertinent references

Write in present tense


Who did and how (what methods were used);

Contains everything on the study design

Clinical research could be divided into subsections such as study population, intervention (if one is used), study variables, measurement methods, and analytic methods;

Write in the past tense


What has been found

Report quantitative and qualitative data or findings

Highlight patterns

Summarize data from tables and figures

Write in the past tense

Do not discuss  data only present them


Key findings and originality of the research, what is new

Strengths and weaknesses of the study;

Relate your results to the previous literature

Further implications of the study: in education, research, applicability on other patient populations, other communities or patient organisations

Use a predefined outline

Conclusions need to be supported by data



Main findings of the research and their significance

Sometimes integrated within the discussions


and acknowledgements

Include accurate and complete references

Make sure they are formatted according to the journal instructions

Cite correctly and do not misinterpret the findings of others

Give credits to all the contributors

Use reference management software


and Figures

Tables and figures must present essential information

Must be suggestive and intuitive;

Easy to interpret and remember

Guideline for Tables and Figures

Last modified
01 February 2021
New study!

Access to COVID-19 vaccination in people with rare diseases