Goals of the diagnosis survey Measuring the time necessary to obtain a diagnosis as a rare disease patient Understand the different steps of the diagnosis journey Define the obstacles limiting the access ID: 1045322
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1. Rare barometer survey The journey to diagnosis for people living with a rare disease
2. Goals of the diagnosis surveyMeasuring the time necessary to obtain a diagnosis as a rare disease patientUnderstand the different steps of the diagnosis journey Define the obstacles limiting the access to diagnosis Identify best practices, tools, support and services contributing to a faster diagnosisIdentify the role of new technologies
3. SHAPING THE ONLINE QUESTIONNAIREOnline panelRefine the diagnosis concept and identify what is new in the field61 participantsTopic Expert CommitteeContribute to identifying issues and indicators to include in the questionnaireEURORDIS' Council of National Alliances MembersInput on topics and indicators to be includedFeedbackon the questionnairePilot test with patients and carers9 participantsTranslations checked in 15 languagesby native speakersLiterature reviewIdentify indicatorsalready existing or still missing
4. ONLINE QUALITATIVE PANEL“Facing the unknown. Feeling alone. Dealing with tremendous pain affecting my emotional and mental health. Facing a monster without a name. Not knowing what I have to deal with and if I could fight it.” Patient and patient advocate, UKInsights into the diagnosis journey from a patient perspective:61 participants in an online platform in English8 individual interviews in local languages46 diseases represented25 countries represented, from five continentsDifferent activities: questions, images, videos, discussion forum
5. TOPIC EXPERT COMMITTEE
6. TARGET POPULATIONAll patients living with a rare disease and their family members, including:Former or recovering patients (e.g. cancer survivors)UndiagnosedAny experience of diagnosis: difficult or easy, long or shortWORLDWIDEIncluding a pilot in Argentina, Australia, Brazil, Malaysia, South Africa andUnited Arab Emirates26 languagesALL rare diseases17 MARch 15 JUNE2022ONLINE Questionnaire
7. Diagnosis statusCONFIDENTIAL
8. Time to obtain a diagnosis CONFIDENTIAL
9. CONFIDENTIAL
10. Impact on reproductive choices CONFIDENTIAL
11. Diagnosis received through prevention measures508/7546CONFIDENTIAL
12. Proportion of respondents who were diagnosed through standard test at birth by countryCONFIDENTIAL
13. Types of genetic tests CONFIDENTIAL
14. Misdiagnosis CONFIDENTIAL
15. Consequence of Misdiagnosis CONFIDENTIAL
16. Inequalities in access to diagnosisBased on questions included in the survey:Demographics: gender, age, country, geographical area, ethnicity.Based on further analysis: Disease characteristics: prevalence, incidence (rare cancers), transmission mode, functional consequences.Country characteristics: national plans for rare diseases, number of centers of expertise, centralised/decentralised/regionalised etc.
17. REQUEST TAILORED ONLINE DASHBOARDsAvailable in all 26 languagesFollow your dissemination work and get a first insight into the results : CountryDiseaseDisease groupDisease group per countryDisease group by regionNumber of participants and sociodemographic informationRaw results for some indicatorsContact the Rare Barometer team at rare.barometer@eurordis.org https://www.sphinxonline.com/tiny/v/OD0blzqHVD
18. Academic publicationhttps://ojrd.biomedcentral.com/articles/10.1186/s13023-019-1123-4Survey results will stay confidential until they are published in OctoberSeveral publication formats are envisaged: policy-oriented with recommendations or social-science angle
19. OVERALL RESULTSGRAPHICREPORT6-8 pagerEnglishCONDENSEDFACTSHEET1-2 pager26 languageshttp://download2.eurordis.org.s3.amazonaws.com/rbv/dataprotectionsharing/FR_RB%20Data%20Survey%20Fact%20Sheet%20%28condens%C3%A9%29.pdfhttp://download2.eurordis.org.s3-eu-west-1.amazonaws.com/rbv/20-01-24%20RB%20Data%20Survey%20Fact%20Sheet_Final.pdf
20. Tailored for EURORDIS members if enough respondents: per country, geographical region, disease, group of diseasesSpecific key resultsTAILORED RESULTS CONDENSEDFACTSHEET1-2 pager26 languages
21. Timeline: publication of results27 JuneEuropean Conference on Rare Diseases27. June – 2. July 2022 CZ Presidency technical meeting on early diagnosis and Newborn Screening23 July25 OctHigh-level conference on a Roadmap for Europe's Action PlanEuropean ParliamentTBDRare Disease Day 20232023TBDTBDTBDTBDPreliminary AND CoNFIDENTIAL results
22. Resources:PDF version of the questionnaire: https://download2.eurordis.org/rbv/Diagnosis_Survey/Rare_Barometer_diagnosis_questionnaire_EN.pdf#Link to the questionnaire: http://tiny.cc/survey_diagRD Link to the communications toolkit:https://www.eurordis.org/rare-barometer-diagnosis-survey-toolkit Example of academic publication:https://ojrd.biomedcentral.com/articles/10.1186/s13023-019-1123-4Example of graphic report:http://download2.eurordis.org.s3-eu-west-1.amazonaws.com/rbv/20-01-24%20RB%20Data%20Survey%20Fact%20Sheet_Final.pdf Example of factsheet:http://download2.eurordis.org.s3.amazonaws.com/rbv/dataprotectionsharing/FR_RB%20Data%20Survey%20Fact%20Sheet%20%28condens%C3%A9%29.pdf
23. Thank you to all partners and corporate donors in 2022!