Registry of rare primary headaches in Italian headache centers

RegistRare: a Retro-prospective Registry of Rare Primary Headaches in Italian Tertiary

Observational University of Florence · NCT03416114

This study is trying to gather information about rare primary headaches from patients at Italian headache centers to better understand how common they are and how they affect people.

Quick facts

Study typeObservational
Enrollment3000 (estimated)
SexAll
SponsorUniversity of Florence Academic / other
Locations1 site (Florence)
Trial IDNCT03416114 on ClinicalTrials.gov

What this trial studies

This study aims to create a registry that collects data on the prevalence and incidence of rare primary headaches in patients referred to Italian Tertiary Headache Centres. It employs a retro-prospective approach, gathering both historical data from May 1, 2014, and ongoing prospective data starting May 1, 2017. Participants will provide informed consent and their data will be coded to ensure privacy and avoid duplication. The registry will include demographic information, diagnosis, treatment, comorbidities, and clinical features of the headaches.

Who should consider this trial

Good fit: Ideal candidates are individuals diagnosed with rare primary headaches as defined by the ICHD-3 beta criteria.

Not a fit: Patients with common headache disorders or those who do not meet the criteria for rare primary headaches may not benefit from this study.

Why it matters

Potential benefit: If successful, this registry could enhance understanding of rare primary headaches, leading to improved diagnosis and treatment options for patients.

How similar studies have performed: While there may be other studies on headache disorders, this specific registry approach focusing on rare primary headaches is relatively novel.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* diagnosis of rare primary headaches (Part One, Chapter 3 and Chapter 4, ICHD-3 beta)
* signed informed consent

Exclusion Criteria:

* none

Where this trial is running

Florence

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Headache Disordersrare headachesepidemiology
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.