Porphyria Expert Clinical Center application

Beginning of 2021, because of an identified need, Ipnet decided to create a transparent procedure to endorse porphyria clinical centers as “centers of expertise”, the Porphyria Expert Clinical Centers (PECC), alongside the traditional Ipnet diagnostic centers.

Three types of centers were envisaged: cutaneous PECC, acute PECC and “full” PECC (covering cutaneous and acute). The criteria that were decided on, reflect experience (duration of clinical care for porphyria patients, but also the size of the cohort of patients that is followed), the presence of multidisciplinary care and continuity of care, the availability of the necessary diagnostic and treatment modalities for the different types of porphyria, contribution to scientific progress in the field of porphyria and the endorsement by the hospital management as well as by a relevant patient organisation.

The procedure is overlooked by a newly created Ipnet Working Group (PECC WG). Several centers were endorsed meanwhile (see list of endorsed centers here). The procedure remains open all year round; the PECC WG will evaluate candidacies at least twice a year.

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Procedure and criteria

for PECC application

Ipnet-endorsement of Porphyria Expert Clinical Centers (PECC)

 Centers can apply to be a cutaneous, an acute or a full PECC. The procedure and criteria are based on similar procedures in other countries and in the ERN initiative where clinical expertise was vetted and endorsed and inspired by the relevant scientific literature.

If your center was endorsed via a national or international procedure for clinical expertise in the field of porphyria, simply upload the file you submitted for that endorsement procedure. The Ipnet PECC Working Group (see below) will check if the criteria used align sufficiently with the Ipnet criteria and if so, your Ipnet endorsement will immediately be finalized. If the criteria do not align sufficiently with the Ipnet criteria, the Ipnet criteria (below) will apply.

Procedure:

  • The candidate PECC is a full or associate Ipnet member
  • The candidate PECC receives endorsement by the hospital management (only one center per hospital/hospital group), which countersigns the application
  • The candidate PECC collects porphyria patient organisation endorsement (national/international)
  • The candidate PECC applies for Ipnet endorsement (criteria and application form below).
  • The PECC application is evaluated by the Ipnet PECC Working Group, consisting of at least 3 clinicians, one lab specialist and a patient organization representative, at least one of whom is a Board The endorsement is based on compliance with the following criteria:

 

A Porphyria Expert Clinical Center (PECC) is a single health care provider or a formalized collaborative network of health care providers, that adheres to the following minimum criteria:

  • The PECC can provide directly or in collaboration, highly specialized, multidisciplinary patient care: diagnostics (Ipnet EQAS endorsed diagnostic facility on site or formalized collaboration with an Ipnet lab off site), counselling, treatment, holistic care, follow-up and transition from childhood to adulthood, for porphyria patients
  • The PECC multi-disciplinarity is illustrated by the availability of a list of specialists involved in the care for porphyria patients, on request. These specialists at least include: internal medicine (e.g. at least one of the following: general internal medicine/emergency medicine/hematology/hepato-gastroenterology/endocrinology/ metabolic diseases), AND dermatology AND The PECC has access to the following specialities: pediatrics, psychology, psychiatry, emergency medicine and intensive care.
  • The PECC can guarantee continuity of care, therefore the PECC includes more than one designated clinical porphyria specialist and takes responsibility to coach, train and appoint new clinical porphyria specialists to ensure continuity.
  • The PECC coordinates the active (i.e. patient contact over the last 5 years) care for a minimum of:
  • 20 patients, in either cutaneous OR acute porphyria, to be endorsed as a cutaneous OR acute PECC
  • OR 40 patients with cutaneous (20 or more) AND acute (20 or more) porphyria, to be endorsed as a full PECC
  • The PECC has experience with the treatment modalities for these patients (e.g. drug treatments for porphyria, hemin infusions, EPP prevention and treatment, liver transplantation, bone marrow transplantation, phlebotomies).
  • The PECC contributes to implementation of guidelines and care standards, their diffusion and the creation of awareness, the education of patients, caregivers and health care providers, in collaboration with the national and/or international learned societies (e.g. Ipnet) in the field and patient organizations.
  • The PECC participates in research (i.e. national/international registries, basic science, clinical trials and peer-reviewed publications, contributions/presentations at international conferences).
  • The PECC has been involved in all of the above for a minimum of 3 years at the time of
  • The endorsement is re-evaluated every 5
  • The PECC nominates a coordinator or clinical lead for the
  • The PECC is open for visitation by the Ipnet PECC Working