Introduction Hereditary hemorrhagic telangiectasia (HHT) is a rare inherited disease. Nosebleeds and mucocutaneous telangiectases are frequent manifestations. One of the predilection sites of the latter are oral mucosa, face and lips. The first manifestation is often delayed for decades. This is problematic as an early screening for visceral manifestations is recommended to avoid serious complications.
Methods The German HHT self-help group prospectively noted first contacts of affected persons. On June 16th 2018 a case report about a serious infectious complication after professional dental cleaning due to lung shunting in HHT was published in the journal of the German dental association and the Federal Association of Fund Dentists in Germany. This was connected with a call to search for typical telangiectases and if in combination with nosebleeds to connect the patient with the self-help group via phone or email. Reminders were published September and December 2018 in the same journal.
Results Within 21 months before the call 3 spontaneous first contacts by phone were registered (0.14/month). During the 15 months after the call the mean frequency of calls was 2.7 per month.. Two of the latter could be connected directly to the publication. A similar increase was noted for email, but not for contacts by internet forum or facebook (not mentioned in the call).
Conclusion First Results indicate a moderate efficacy of the call presented by a rise of the frequency of contacts. An interdisciplinary cooperation seems to be an effective way for screening and – in consequence – for reducing morbidity in patients with this complex disease. We therefore plan to use this approach also for other rare diseases.
ClinicalTrials.gov Identifier: NCT03549949
Poster-PDF
A-1351.PDF
