For Professionals

Together we can:

1. Reduce diagnostic delay and improve quality of care

We believe this is achievable through education of

• radiologists, who are the first link in the diagnostic chain.
• neurosurgeons, the small group of specialists who actually treat the condition, and whose successors must be trained.
• gynecologists and urologists, the first clinicians patients typically meet, and the specialty most likely to encounter pelvic and sexual symptoms.
• pain medicine specialists, the most common downstream referral.

2. Accelerate research that advances the understanding, diagnosis, and treatment of Tarlov cyst disease

We find the current Tarlov cyst disease research environment is talent-rich and infrastructure-poor. Therefore we are

• designing a competitive Tarlov Cyst Disease Research Grant Program, with a published Request for Proposals, peer-review process administered through the Medical Advisory Board, and a defined annual award cycle.
• designing and launching a HIPAA-compliant patient registry and biorepository protocol, including curated clinical histories, standardized imaging metadata, and consent for tissue and DNA sampling.
• convening a multidisciplinary research agenda-setting symposium which aims to produce a consensus case definition and phenotypic classification for Tarlov cyst disease.
• developing a postdoctoral fellowship in Tarlov cyst disease genetics or mechanistic research with a minimum two-year funding commitment, and defined research aims.

Our analysis shows that:

The diagnostic journey is unacceptably long and convoluted

Community members described five-, ten-, and twenty-year diagnostic odysseys and being frequently dismissed before being correctly diagnosed. Radiologist underreporting (i.e., cysts visible on MRI but labeled incidental) was identified by clinicians and the patient community alike as the single highest-leverage intervention point.

Treatment outcomes remain inadequately characterized

People living with Tarlov cyst disease and their clinicians face a treatment landscape in which the most fundamental question — which intervention will help me, and how much? — remains stubbornly difficult to answer. Surgical outcomes data are concentrated in a small number of single-surgeon case series, with no shared case definition, no standardized outcome measures, and limited long-term follow-up. Comparative effectiveness data across surgical approaches, image-guided procedures, and conservative management are largely absent. As a result, treatment counseling and shared decision-making proceed, of necessity, on the basis of expert judgment rather than published evidence — a gap that a HIPAA-compliant registry, standardized outcome measures, and dedicated outcomes research may help close.

The science is bottlenecked, not blocked

Genetic, mechanistic, and outcomes research is being held back by funding, sample access, and the absence of a shared case definition. A modest, well-targeted research investment, paired with a HIPAA-compliant registry and biorepository, can unlock a new wave of progress.

Education must reach the specialties people meet first

Awareness of Tarlov cyst disease remains low in the medical community. Specialized radiologists and neurologists are aware of the disease, however, most providers, especially those without a clinical or research interest in the disease are unaware of the disease. Therefore, many patients do not receive the information, care, or referrals they need in a timely fashion. Radiologists, neurosurgeons, gynecologists, urologists, and pain medicine specialists were named repeatedly as the highest-priority audiences. About 90% of those affected are women; the condition’s overlap with pelvic pain and persistent genital arousal disorder remains poorly recognized in women’s health.