Onderzoeksagenda’s

Op deze pagina geven we een overzicht van de ons bekende onderzoeksagenda’s die door diverse organisaties en samenwerkingsverbanden zijn samengesteld. De eerste buitenlandse organisatie die daar mee begon, in 2012, was de LDA (Lyme Disease Action) in de UK, met een aanpak via de James Lind Alliance. Ook volgde de Amerikaanse patiëntenorganisatie Lymedisease.org in 2017.

In Nederland werd naar aanleiding van het Burgerinitiatief Ziekte van Lyme (2010) een traject op gezet om een breed gedragen onderzoeksagenda op te starten. Dit werd het Actieplan van ZonMW (2016), met 12 prioriteiten, ingedeeld naar onderwerpen voor Behandeling, Diagnostiek, Preventie en Basaal onderzoek. De laatste hebben we hieronder genoemd.

De onderzoeksagenda’s hebben overlap en laten vooral ‘thema’s’ zien, die nog nadere uitwerking nodig hebben en nog zeker niet in het stadium van een ‘onderzoekscall’ zijn.


LDA (Lyme Disease Action) / James Lind Alliance UK, 2012: Top 10 Lyme Unknowns


  1. What is the best treatment for children and adults presenting with a) early Lyme disease without neurological involvement and not including erythema migrans and b) late Lyme disease of any manifestation? To include consideration of drug(s), dose, duration.
  2. What key questions (clinical and epidemiological) should be considered to help make a diagnosis of Lyme disease in children and adults in the UK and would a weighting table be useful?
  3. How effective are the current UK tests in detecting infections due to the genospecies and strains of B burgdorferi sl in the UK and which single test and what combination of tests performs best in diagnosing or ruling out active Lyme disease. Should stage of the disease and patient age be taken into account when interpreting these tests?
  4. What are the outcomes of cases where long term treatment has been used?
  5. What is the optimal course of action if symptoms relapse after a treatment course is finished?
  6. What is the optimal course of action if symptoms persist after initial treatment: should antibiotic treatment be continued until all symptoms have resolved or should a different dose or different antibiotic be used and what is the course of action if treatment appears to fail completely?
  7. Are continuing symptoms following conventional recommended treatment due to continued infection, or an immune response or other process?
  8. How common is relapse and treatment failure and is it related to disease stage, gender, co-infections or any other factor?
  9. Are there long-term consequences if treatment is delayed?
  10. Can Lyme be transmitted via other means: person to person sexually, transplacentally or by breast feeding; through organ donation; through blood transfusion?

Bron: www.lymediseaseaction.org.uk/what-we-are-doing/research/top-10-lyme-unknowns/


Onderzoeksagenda Lymedisease.org USA, dec. 2017: Top Ten Lyme Disease Research Questions


  1. What direct diagnostic test would be both highly sensitive and specific for Lyme disease and co-infections?
  2. What is the most effective treatment protocol to restore health to patients with Lyme disease?
  3. What is the impact of delayed diagnosis on the course of Lyme disease?
  4. Which natural therapies and protocols are most effective?
  5. What other diseases (e.g. MS, Parkinson’s) may be caused by Lyme disease?
  6. What are the most effective methods for rehabilitating the brain in neurologic Lyme disease?
  7. Why do some people develop chronic Lyme disease after antibiotic treatment?
  8. What triggers reactivate chronic / late stage Lyme disease or co-infections after remission?
  9. How do co-infections affect the immune response and course of illness in patients with Lyme disease?
  10. Are treatment regimens tailored for specific symptoms more effective? (e.g. neurologic)

Bron: www.lymedisease.org/top-ten-lyme-priorities/


Actieplan ZonMW, 2016: Basaal onderzoek Top 3 onderzoeksonderwerpen


  1. Onderzoek naar de rol van co-infecties in het ontstaan of in stand houden van Lymeziekte. Co-infecties kunnen de aanwezigheid van Borrelia ‘verraden’ of doen vermoeden. Ontwikkelen van nieuwe testen voor het aantonen van meerdere co-infecties.
  2. Onderzoek naar de eigenschappen van de Borrelia-bacterie en het ‘gedrag’ ervan in de mens; de overlevingsmechanismen van de bacterie; de wijze waarop hij zich in het lichaam ophoudt (“vermomt”); consequenties hiervan voor pathologie (zie punt 3b), diagnostiek en behandeling.
  3. Twee onderwerpen op de 3e plaats:

    • Borrelia besmetting bij mensen met neurodegeneratieve en neurologische ziekten (zoals dementie, ALS en MS, Alzheimer, Parkinson); CVS/ME; psychische aandoeningen. De link tussen neuroborreliose enerzijds en neurodegeneratieve en neurologische en psychische ziekten anderzijds. Ontwikkeling van PET/SPECT scans voor het aantonen van Borrelia in de hersenen en het verklaren van neurologische verschijnselen als gevolg van een persisterende Borrelia-infectie.
    • Onderzoek naar de reactie van het immuunsysteem op een besmetting met (een zich verdedigende, zie punt 2) Borrelia en risicofactoren voor chronische lyme op individueel niveau (pathologie).

Bron: ZonMW Actieplan, 2016


Onderzoeksagenda Working Group Tick Borne Diseases, 2018


  1. Coordinated national surveillance program.
  2. Advanced technologies and systematic studies are also needed to rapidly identify new disease agents that pose emergent risks to public health, including to the blood supply.
  3. To reduce exposure to ticks, we need a comprehensive understanding of the biological drivers behind the continued spread of tick-borne diseases, so that effective tick- and infection-control methods can be identified and validated.
  4. Need also exists for the transparent development of a safe, effective human vaccine to prevent Lyme disease, the most common of these illnesses.
  5. It is crucial to educate health care professionals and the public about tick-borne disease prevention, especially best practices for protection from tick bites.
  6. There is a critical need for sensitive and specific direct-pathogen detection strategies that are broad enough to cover multiple potential tick-borne pathogens.
  7. Understanding the etiology and pathogenesis of ongoing symptoms after initial treatment should be a clinical research priority.
  8. Investigations are also needed into the potential roles of immunologic responses, bacterial persistence, and coinfecting pathogens in order to design and test new therapies and, ultimately, improve outcomes and care for patients with ongoing symptoms.
  9. All research, prevention, and education initiatives should be inclusive of special populations such as children, who suffer disproportionately from tick-borne diseases.

The Centers for Disease Control and Prevention (CDC) currently recognizes 18 tick-borne pathogens in the United States.

For Lyme: A comprehensive understanding of the full economic and societal cost remains unknown. It is likely orders of magnitude higher and potentially a $50- to $100-billion-dollar problem for the United States, although more research is needed. 

Bron: Tick-borne Disease Working Group 2018 Report to congress

Aangepast: 17 juni 2019