After the publication of the ESE Clinical Practice Guideline on the Treatment of Chronic Hypoparathyroidism in Adults in 2015, ESE perceived a need to investigate and develop further expert clinical recommendations and strategies that would promote best clinical practice in support of parathyroid disorder patient care.
Following a year of planning and securing funding to implement such a project, a 4-year PARAT programme of activities started with the 1st Expert Workshop on Parathyroid Disorders, June 2018, Santpoort, The Netherlands attended by 25 invited experts alongside 10 faculty.
Since then, the expanded PARAT community of 100 leading parathyroid experts from over 20 countries, have collaborated and engaged in 15 inter-connected activities to deliver the programme objectives. To learn more about the PARAT programme history, its focus, governance and recent outputs, you can view a short video here.
What are Parathyroid Disorders?
Parathyroid conditions are disorders that affect the four small glands in or around your thyroid gland. They release parathyroid hormone (PTH) – the hormone that controls your body’s ability to regulate calcium and phosphorus.
When this hormone is too low or too high, it can lead to other health problems such as muscle cramps and nerve or bone disorders.
Treatment for parathyroid conditions focuses on restoring the balance of calcium and phosphorous in the blood. If a tumor is detected, it may be necessary to carry out minimally invasive procedures or other surgical options.
PARAT programme focus
Primary hyperparathyroidism (PHPT) is a common endocrine disease, especially in postmenopausal women. However, its differential diagnosing to familial hypocalciuric hypercalcemia, the definition and clinical course of normocalcemic PHPT, and the optimal management of its recurrency after surgical treatment, represent areas of uncertainty that require clarifications.
Thirteen specific PARAT programme consensus recommendations were recently published in European Journal of Endocrinology in relation to PHPT. These, along with 20 other recommendations relating to HypoPT and PPL, have been translated into educational material and activities to help increase awareness of parathyroid disorders for a broad audience, including younger endocrinologists in training.
Hypoparathyroidism (HypoPT) is a rare disease characterized by low calcium concentrations due to insufficient PTH secretion from the parathyroid glands, occurring most commonly after neck surgery. Prevention and prediction of surgical injury to the parathyroid glands are essential to limit the disease-related burden. Long-term treatment modalities including the place of PTH replacement therapy and the optimal biochemical monitoring and imaging surveillance in chronic HypoPT need to be refined.
Ten specific PARAT programme consensus recommendations were recently published in European Journal of Endocrinology in relation to HypoPT. These, along with 23 other recommendations relating to PHPT and PPL, have been translated into educational material and activities to help increase awareness of parathyroid disorders for a broad audience, including younger endocrinologists in training.
Parathyroid disorders in relation to preconception, pregnancy and lactation (PPL) Major calcium metabolic changes develop in pregnancy and during lactation ensuring mineralization of the skeleton in the foetus and new-born, mainly driven by the PTH-related peptide (PTHrP). This “PTH analogue” is largely produced by the placenta and mammary tissue contributing to calcium transport over the placenta in pregnancy and into breast milk during lactation.
Ten specific PARAT programme consensus recommendations were recently published in European Journal of Endocrinology in relation to PPL. These, along with 23 other recommendations relating to PHPT and HypoPT, have been translated into educational material and activities to help increase awareness of parathyroid disorders for a broad audience, including younger endocrinologists in training.
The ESE PARAT Programme is led by a Steering Committee, Co-chaired by Professor Jens Bollerslev (Norway) and Professor Peter Kamenický (France), supported by 10 other parathyroid disorder experts, an external Programme Manager and the ESE office.
PARAT Steering Committee members were appointed on the recommendation of the Clinical committee, Education committee, Rare Disease committee or as a representative of the Early Career Task Force, Executive committee or ESE Membership at large.
2021 Steering Committee
Co-Chairs:
- Professor Jens Bollerslev, Norway
- Professor Peter Kamenický, France
Steering committee members:
- Professor Natasha Appelman-Dijkstra, The Netherlands
- Professor Zhanna Belaya, Russia
- Professor Luis Cardoso, Portugal
- Professor Neil Gittoes, UK
- Professor Ansgar Heck
- Professor Claudio Marcocci, Italy
- Professor Stefan Pilz, Austria
- Professor Lars Rejnmark, Denmark
- Professor Heide Siggelkow, Germany
- Professor Elena Tsourdi, Germany
- Professor Alexandra Zahn, Germany
Working Groups
The PARAT 2021 programme is further organised into three active Working Groups. Each comprises a sub-topic area Lead, Deputy, Editor and a medical education representative from the PARAT steering committee, plus 6-8 invited experts from the PARAT community.
- Management of primary hyperparathyroidism (PHPT)
- Management of chronic hypoparathyroidism (HypoPT)
- Management of parathyroid disorders during pre-conception, pregnancy & lactation (PPL)
PARAT community
PARAT has established a community of parathyroid disorder experts from 21 international countries. As country or expert ambassadors, they have actively helped the Steering Committee to develop the scope, breadth, depth and overall outputs of the programme through workshop and webinar attendance, presenting in forums, taking part in surveys or providing critical appraisal and review of draft materials.
To help increase awareness on parathyroid disorders in your local country, consider reaching out to our PARAT country ambassadors.
Programme methodology
View a slide deck on the PARAT governance and methodology here.
Each working group initially identified and agreed a set of consensus questions to ask, based on the priority unmet needs of their specific sub-topic area, through a cascading process of fortnightly Zoom calls, email exchanges and preparation of draft documentation. All working groups met with the steering committee on a monthly basis.
After drafting and refining each question in turn based on working group members professional experiences and opinions, the team carried out additional literature searches of original articles after 1999 to validate their planned responses. The three working groups synthesised their respective work into a recommended set of consensus questions and responses for wider review by their respective Editors and Medical Education group representatives.
Finally, the PARAT Co-chairs harmonised the outputs from the three working groups into a single set of recommendations, which was further edited into an acceptable format for submission to European Journal of Endocrinology as an invited review article. The accepted EJE consensus article content has been used as the basis for all subsequent medical education materials and formats for wider dissemination.
Having initially identified and prioritised the unmet parathyroid disorder educational needs during 2 expert workshops, the aims and final scope of the programme were established:
Deliver expert recommendations through working groups and communication on:
- Management of primary hyperparathyroidism (PHPT)
- Management of chronic hypoparathyroidism (HypoPT)
- Management of parathyroid disorders during pre-conception, pregnancy & lactation (PPL)
Address unmet educational needs by devising and disseminating:
-
High quality medical educational activities and outputs including events, publications, enduring materials and other learning experiences.
Increase awareness of the expert recommendations amongst:
- The wider ESE Focus Area on Calcium and Bone
- General endocrinologists in training
- Associated non-endocrine clinical colleagues
By the end of 2021, the PARAT community had established 33 expert recommendations on how to best diagnose, manage and treat parathyroid disorder patients. These have been translated into a suite of medical education materials and published in the European Journal of Endocrinology.
The programme is designed to be of benefit to various clinical communities:
- International parathyroid disorder experts
- General endocrinologists
- All ESE Members
- Non-endocrine practitioners
- Patient stakeholder groups
ESE is grateful to Takeda and Ascendis Pharma for their previous support to this programme via restricted educational grants.
Neither organisation played any role in the objectives, aims, scope, faculty selection, development planning, outputs or publications of PARAT. All steering committee faculty members declared any conflicts of interest in respect of these organisations and received ESE approval to take part.