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NCT Number: NCT03416114

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

Retro-prospective survey on specific and overall prevalence and incidence of rare primary headaches (Part One, Chapter 3 and Chapter 4, ICHD-3 beta) in patients referred to Italian Tertiary Headache Centres in a 3-year (May 1, 2014-April 30, 2017 - retrospective data) and annually (from May 1, 2017 - prospective data).

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Key information

Conditions

Headache Disorders Brain Diseases Central Nervous System Diseases Nervous System Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

Careggi University Hospital

Florence, 50139, Italy

Location status: Recruiting

Location contact

Chiara Lupi, MD

SUB_INVESTIGATOR

Silvia Benemei, MD

CONTACT

About this study

We planned to collect data from May 1, 2014 and afterwards, by means of both retrospective and prospective approaches.

All patients who have received or will receive a diagnosis of rare primary headache will be asked to participate and, to this aim, to give their informed consent. Each participating Centre should have received the approval of the competent Ethics Committee before commencing any study procedures.

The registry will contain anagraphic information and data about diagnosis, treatment, comorbidity, and clinical features of the headache. Patients' data will be coded through the Italian Health System unique identifier, in order to avoid duplications of patients referring to more than one Centre and also to monitor multiple referrals.

A web-based open source platform (SurveyMonkey.org) will be used to collect data.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Exclusion criteria

  • none

Treatment and study plan

Primary outcomes

  1. Incidence and prevalence in Tertiary headache Centres

    Time frame: 10 years

Study contacts

Contact information is provided by the study sponsor or research team.

Silvia Benemei, MD

CONTACT

[email protected]

00393452842070

Sponsors and collaborators

Lead sponsor

Silvia Benemei

Other

Collaborators

  • Maggiore Bellaria Hospital, Bologna
  • University of L'Aquila
  • University of Modena and Reggio Emilia
  • University of Naples
  • University of Roma La Sapienza
  • University of Trieste

Registry information

Official study title

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

Acronym: RegistRare

Important dates

Study start
2017
Primary completion
2027
Study completion
2027
First posted
Jan 30, 2018
Registry last updated
Jan 30, 2018

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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