He kōwae rangahau pāhekoheko

Heart disease is the major killer of women in Aotearoa New Zealand, although this is frequently not recognised. Moreover, women are not represented in clinical trials at the same level as men. The risk of heart disease in women rises significantly with hormonal shifts, especially in the menopause transition. Why this occurs is not well understood. Potential changes in risk profiles due to hormone initiation in transgender populations is also poorly understood. There is a clear need for education, resourcing, and mechanistic knowledge from the cellular to the community level. 

We will: 

(1) identify what is known about the menopausal risk of heart disease with our communities and clinicians, develop resources, and learn from our kaumātua. 

(2) Identify what changes occur in our cells and systems to underpin womens increased risk of heart disease. 

(3) Assess support for Pasifika women and build resources for change. (

4) Conduct a pilot study examining the feasibility of a transgender heart disease risk database for Aotearoa. 

Together this research will shift the balance of knowledge for equitable outcomes for women and other minoritised gender experiences.

Inherited cardiovascular diseases (CVDs) such as cardiomyopathies, channelopathies, and aortic diseases can cause sudden death and immense distress for families. Identifying the underlying genetic cause is vital for accurate diagnosis and clinical care. For Māori and Pacific peoples, current genetic testing provides fewer answers compared to other ethnic groups, leading to ongoing uncertainty, intergenerational loss, and entrenched health inequities. 

This project will shift the landscape of cardio-genomic research in Aotearoa New Zealand (ANZ) by delivering three key outcomes: 

(i) We will build a secure ANZ-based genetic variant database by uniting siloed genetic test data from ~3000 patients with inherited CVDs. This central resource will enable accurate interpretation of genetic results, especially for Māori / Pacific peoples who are underrepresented in global databases. We will also study detailed, long-term health information on affected patients/families to uncover patterns and identify ways to improve care for patients and whānau.  

(ii) To strengthen understanding and communication about genetics and inherited cardiovascular conditions, we will co-design culturally relevant resources with Pacific patients/families. (iii) We will apply advanced genome sequencing to uncover new genetic causes for patients who have exhausted standard clinical testing. 

This is critical for Māori /Pacific families, who are most affected by the limitations of standard genetic testing. This project embodies the “not about us without us ” principle with governance by our Kaitiaki Rōpū ensuring tikanga and Māori data sovereignty, and a Pacific team leading community engagement and managing Pacific genomic data. This partnership ensures research is meaningful, culturally grounded, and benefits Pacific and Māori patients.

E whakaneinei atu ko ēnei putanga matua:

• Whakakaupapatia te mahinga tuatahi a Pūtahi Manawa, te hōtaka rangahau hei kaupapa Māori o te hauora manawa, tēnei hōtaka kua waihangatia kia Māori ai.
• Te whakangungu i ngā Māori toru tekau ki tētahi whaitua hauora manawa.
• Te whakaahua, ngā whānau Māori e noho tahi ana me te mate manawa, ngā rongoā nā o rātou ake wheako.
• Ka tutuki i ngā māramatanga whakahirahira, ngā māramatanga rongomaiwhiti hoki ki ngā tauwehe hei tākoha atu ki te mate manawa i waenga i a ngai Māori, me te tautohu i ngā taimaha o te mate manawa mo ngai Māori, tae rā anō ki te pāpori, te ahurea, te whānau, te mana wairua, te aurongo, te mātai hinengaro, me ngā whakaaweawe, ki te whakamana i te whanaketanga o te hauora manawa a te Māori.

“He mana tā ēnei putanga i te hiranga nei o te whanaketanga hauora manawa mo ngai Māori e whai tikanga ana”.

He pēhanga toto tā te nuinga o ngā pakeke mate huka, ā, haurua o ēnā tāngata kua pāngia e te pēhanga toto, kāore i a rātou te whakaritenga mo te toto huka pai, nā ka whakakonuka ki te mate huka. Me whakahaere tika i te toto huka me te pēhanga toto, he mea whakahirahira ki te whakaheke tūraru o te manawa hē me te roro ikura.

Kua whakahaerehia he heipūtanga rerekē e te manaaki hauora, te mate huka me te pēhanga toto. Ka tirohia te hōtaka mahi nei ki te ōritenga o ngā hononga i waenga i ngā pēhanga toto me te toto huka.

“Ka waihangatia mātou tētahi hōtaka kaupapa akoranga kia hāpai ake i te mōhiotanga e hāngai ana ki ngā mōrearea o te pēhanga me te tautohu i te awenga pēhanga. Ko tā mātou whāinga matua kia angitū ai ngā whanaketanga me te maha o ngā putanga mana taurite mo ngā tāngata pēhanga i Aotearoa nei”.

He raru nui tēnei mea te mate manawa o te mate ohorere i waenga i ngā rangatahi. He momo tonu tērā. Kua rangahau kē i ngā raru o te mātauranga momo whakaheke mo e hia tau, engari, he whakautu kua kimihia mo te haurua o ngā tūroro. Ka tūpono ki ngā whakatau māuiui mo te tokoiti o ngā tūroro nā ngā taupori ahurea (ko ngai Māori tērā, ko ngā iwi o Te Moana-Nui-Ā-Kiwa hoki tēnā) nā te mea ko te rangahau tērā kua mariu ki ngā tūpuna Pākehā. Ko te take mo tēnei whakatakanga, ki te kimi i ngā whakautu mo ngā whānau i Aotearoa nei, nā runga i ngā whakamātautau Pākehā kua rahua ki te kimi pūtake.

Kua whakaaro mātou ki te āheinga o te raupapa huinga ira ki te rapu i ngā panonitanga o te mātauranga momo whakaheke e whakararu ana i ngā heipūtaga manawa. Mā te rapu i ngā mate e whakararu ana i ēnei momo panonitanga e kawea nei ngā whānau, ka araara ake te aroā o te hāpori ki te mana o te raupapa ira, āwhinatia te panonitanga o tā rātou manaakitanga hauora kia moata rawa te hopu ki ngā whānau e kawea nei te mate whakararu ira, te whakawhanake i te whakatau māuiui o ngā raru manawa, i ētahi wā, ka rato ai tētahi maimoatanga me te kaiāwhina.

I te tau rua mano tekau mā iwa, e rua rau, whitu tekau mā rima miriona ngā wāhine i tautuhitia ki te mate manawa, ā, toru tekau mā rima ōrau ngā matenga wāhine puta noa i te ao, i whakararu ki te mate manawa. Engari, “ko te mate cardiovascular i waenga i ngā wāhine, kua kore ako, kua kore mōhio, kua kore tautohu, ā, kua kore rongoā i te ao whānui”.

Ki Aotearoa nei, ko te tūturutanga, kua wheakohia e ngā wāhine ki ngā tōrite hauora manawa e whakahirahira ana ki ngā wāhine Māori me ngā wāhine o Te Moana-Nui-Ā-Kiwa. Kua patua i te whakamā, kua pēnei tātou i te timatanga o te rautau rua tekau mā tahi. Ko te whāinga o tā mātou hōtaka ranghau, kia tāmatatia te taurite mā te whakatūturu i ngā kōrero me ngā hāpori ki ngā hurihanga whakaahua kia mahi tahi ki te mana taurite hauora manawa i Aotearoa. 

“Ko te whāinga matua ki te whakarahi i te reo mana wāhine me te panoni i ngā āhuatanga o te rangahau hauora manawa e tātaki ana i Aotearoa nei”.